Sunday, March 18, 2012
At little fun...
Sunday, March 4, 2012
Ordinary
I am pleased to report I have found a job. Its my first one ever in the corporate sector and also the first one I've had in my adult life where I actually work with adults vs. children/teens. Its an adjustment but I am excited to be able to provide an income. Likewise, my husband is proud to be daddy-in-charge, taking care of all Evangeline's appointments, therapies and otherwise managing the household.
As my spouse and I switch into our new routines and new roles, there is an adjustment process. For so long we've been "surviving" and the skills we used to keep putting one foot in front of the other during the very difficult times of diagnosis, NICU, job loss, housing loss, financial stress, shunt surgery and more were great to have....but those skills are not so applicable now that we are trying to really live instead of just survive.
In a rather profound conversation last week, Bj and I discussed how so often in US history, a soldier in some awful far-flung place of combat, living in the mud and the cold...fearing for his life as well as the survival of the man fighting beside him, wishes for nothing more than to return to his home, his life, his "normal"...and when he finally makes it back limping, tired and relieved, he finds much to his dismay that he no longer knows how to live the way he lived before. He was changed by the trenches. The heightened awareness that allowed him to survive the enemy, the mire and the muck didn't help him at home... yet he finds himself unable to shut that sense of impending danger off. He feels alone in a crowd. He has forgotten how to live in peace. It is a great American tragedy that this still happens to our soldiers today.
Likewise, even though Bj and I weren't literally in war, in the beginning we did fear desperately for our child's survival. We "knew" that she would be OK, but that didn't stop me from feeling compelled to get up in the dead of night just so that I could place my hand on her sleeping form and feel her belly rise and fall with breath. I didn't want to loose her or my relationship with my spouse in a melee of hospital visits, depression and fear. Bj and I will forever be marked by the life we lived this past year but we made it through. Now our next challenge comes in adaption, in making conscious though gradual changes to how we think, and being in regular communication with one another about what we are going through now and where we want to be in the coming years. Because that is one thing you can never really see on the battlefield- The future is only a wish or a dream. For so long, we survived but now we have a future. One we know is out there even if its still not crystal clear. During lent we are both fasting and seeking direction for ourselves and our family. Hopefully, by Easter we will emerge with a clarity that helps us adjust to a life that maybe has a few surprises but also has some consistency, some predictability, some stability.
I am sure that all moms and dads whose children have had prolonged hospital stays and complicated medical issues feel changed by the experience. Each of us carry our own scars- each the story of a victory, a survival. Finding "normal" doesn't come without its challenges but I know in my heart it can happen. What gives me the courage to try and find it is my daughter's smile. All her hospitalizations have been my stress, my battle- not hers! She isn't bothered, afraid, or discouraged. She loves life, sees the wonder of every new face, item, ray of sunlight. For her BJ and I will lay our hyper-alertness down. We will do it day by day, one choice at a time and in doing this we'll wake up one day and find ourselves- all of us- in a beautiful state of ordinary.
As my spouse and I switch into our new routines and new roles, there is an adjustment process. For so long we've been "surviving" and the skills we used to keep putting one foot in front of the other during the very difficult times of diagnosis, NICU, job loss, housing loss, financial stress, shunt surgery and more were great to have....but those skills are not so applicable now that we are trying to really live instead of just survive.
In a rather profound conversation last week, Bj and I discussed how so often in US history, a soldier in some awful far-flung place of combat, living in the mud and the cold...fearing for his life as well as the survival of the man fighting beside him, wishes for nothing more than to return to his home, his life, his "normal"...and when he finally makes it back limping, tired and relieved, he finds much to his dismay that he no longer knows how to live the way he lived before. He was changed by the trenches. The heightened awareness that allowed him to survive the enemy, the mire and the muck didn't help him at home... yet he finds himself unable to shut that sense of impending danger off. He feels alone in a crowd. He has forgotten how to live in peace. It is a great American tragedy that this still happens to our soldiers today.
Likewise, even though Bj and I weren't literally in war, in the beginning we did fear desperately for our child's survival. We "knew" that she would be OK, but that didn't stop me from feeling compelled to get up in the dead of night just so that I could place my hand on her sleeping form and feel her belly rise and fall with breath. I didn't want to loose her or my relationship with my spouse in a melee of hospital visits, depression and fear. Bj and I will forever be marked by the life we lived this past year but we made it through. Now our next challenge comes in adaption, in making conscious though gradual changes to how we think, and being in regular communication with one another about what we are going through now and where we want to be in the coming years. Because that is one thing you can never really see on the battlefield- The future is only a wish or a dream. For so long, we survived but now we have a future. One we know is out there even if its still not crystal clear. During lent we are both fasting and seeking direction for ourselves and our family. Hopefully, by Easter we will emerge with a clarity that helps us adjust to a life that maybe has a few surprises but also has some consistency, some predictability, some stability.
I am sure that all moms and dads whose children have had prolonged hospital stays and complicated medical issues feel changed by the experience. Each of us carry our own scars- each the story of a victory, a survival. Finding "normal" doesn't come without its challenges but I know in my heart it can happen. What gives me the courage to try and find it is my daughter's smile. All her hospitalizations have been my stress, my battle- not hers! She isn't bothered, afraid, or discouraged. She loves life, sees the wonder of every new face, item, ray of sunlight. For her BJ and I will lay our hyper-alertness down. We will do it day by day, one choice at a time and in doing this we'll wake up one day and find ourselves- all of us- in a beautiful state of ordinary.
Tuesday, February 14, 2012
Your Happiness Gland
No, its not there. Pervert. lol
The "happiness gland" I'm referring to still hasn't been located by medical science. Nobody can pinpoint that place in the brain- the location that decides to release the neurotransmitters that cause the physiological response that your prefrontal cortex, then decides is happy. Whatever medical science knows or doesn't know about emotions, it can say with absolute certainty that the process happening at a molecular level to produce joy is NOT connected in any way to a person's legs or feet. Yup. You heard me right. You don't need to be able to walk to be happy. Just ask anybody who is wheelchair bound. He or she will probably tell you (esp. if they have been rollin from the time that most learn to walk) that feeling your feet is over-rated.
Of all the things I was worried about when we got the diagnoses, the possibility of Evangeline not walking was what stressed me the least. The hydrocephalus was my biggest fear and we've faced that one and come out with the dreaded shunt no worse for the wear. *insert sigh of relief here* When she was born wiggling her toes against the odds and the warnings, I was overjoyed of course but her toes weren't what made her so special to me. It was all of her. All she was going to be and do and see and love and laugh about.
Her orthopedic doctor has told us good things early on about her ability to walk unaided. So have many other professionals. Today, however, at her P/T eval she was examined in depth. The p/t said for the first time today that she may need to use a walker and other orthotics when the time comes to walk. She has some muscle tone issues in her arms and torso as well as her legs. This is why she isn't weight bearing and can't roll over. The extent of her current situation was a surprise, but it didn't upset me. All afternoon I have wondered why images of a tiny, shiny pink walker didn't disturb me the way they probably should. Then, after returning from getting groceries, I sat down all tired out and asked her how her time with Grammy had been. She laughed at me. I asked her if she'd really had fun. She laughed some more. I asked if she was putting me on. She giggled riotously. And I laughed too. Nope. Her happiness gland is definitely not connected to her feet or legs or any other part of her chubby little body. Its a good life.
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 131:14
Saturday, February 11, 2012
Spinal Defect Clinic/Neuro Results
Well, we Kuglers have had a busy week. The highlight however would have to be our neuro visit on Tuesday. After seeing that the swelling at her shunt site wasn't going down, Dr Aldana had her shunt dialed down from 2.0 to 1.0 and OMG what a difference! Within an hour that horrible lump on the side of her head was gone. Now, I can actually see the outline of the shunt instead of a huge pouch of fluid. I have a picture of the hand-held machine they used to re-program the shunt and should get around to posting it here for the curious. Medical machinery is such a wonder. Anyway, it was a super easy process and once the setting was changed the results were immediate. There was no doubt that Maurice does his job to specifications! (Maurice is the name for our shunt, for those who don't know. I named it after Maurice Jones Drew running back for the Jacksonville Jaguars who lead the league in rushing yards this year. I wanted to name the shunt something positive. Something that would indicate it would run and not need revisions. And so Maurice the shunt was christened! Go, Maurice! GO!) In celebration we found a Mo-Jo jersey at Once Upon a Child and I can dress up her to cheer on her shunt any time I feel like it now. :)
In other news we had our first spinal defects clinic Friday and will be making a few changes to Evangeline's daily routine. To start with, I just have to mention that the place the clinic is held is super cute! Its held at the rehab facility connected with Wolfson's Childrens. They have all these precious little themed rooms. The entire place is set up like a mini-city with rooms that look like various play areas. Our room was themed "Grandma's house" and was set up with a mini kitchen with dishes and plastic food and tiny table and chairs etc. They even had a tiny chair Evangeline's size with a tray and we made use of it while we waited and played together with some toys I brought her.
Anyway, our first change is no more prune juice. We spoke to the lady who was in charge of nutrition and poop. We discussed my two concerns which were Evangeline's continual weight gain (now 19 lbs!) and the prune juice which has NOT been doing all it was doing before. We knew this day would arrive and now it has. By eliminating her juice baa, we will be removing empty calories from her diet. We will be replacing the juice with 1/2 spoon of Milk of Magnesia to keep things soft. This may or may not be enough to move things along, but we have the liquid glycerin suppositories to help while we get the dosage right. I just don't want her to go back to the point where she strains to poo and throws up her food from all the straining. So while the transition happens, I will be pretty poop-focused.
The Physical Therapy/Physical medicine eval went well. They were focused on her gross motor and were pleased by her dorsiflexion in her feet, stating that walking will not be a problem but with poor plantar flexion she might not be much of a runner. I'm down with that. They were pleased that her PT eval with early steps was in the works as they feel she could use the assistance.
The Developmental pediatrician came in with a whole bag of interesting-ness. Anybody that walks into a room with a doctor-bag of toys is alright in my book. He assessed Evangeline and noted some delays. Socially she excels, speech she is maybe half a month behind in the sounds she's making but in problem solving she scored at 3.5 months. He said it was at the lower end of normal but only time would tell. He said that we shouldn't focus on PT, we should focus on the cognitive stuff. Don't put her around the TV because the TV will get her attention but won't engage her back. (well neither do the lights and ceiling fans she tries to talk with, but I digress) He says just to do as much engagement as we can with her. I think we've been doing pretty well with this already but we will try and up our game to the next level. We went to target to buy a few more toys. Maybe she doesn't need them, but we felt we did. We will be focusing on trying to get her to generalize the idea she can grab things. I noticed that right before the shunt surgery she was going backwards in her "batting". She was proficient at slapping at toys that interested her but when her vents were so enlarged she did this less and less. I know her brain is playing catch up right now. I'm really not that worried about anything. My child is perfect and under a high-powered microscope like clinic even perfect can look flawed. I know she will catch up when it is her time to do so. But we have extra toys and a plan. You know, for our own entertainment!
The only other new thing to report is her glasses. We ordered them Thursday and they should be in in about 10 days. We chose the safe and durable miraflex frames. They look clunky, but frame designers aren't worried about fashion for babies. They worry about things like safety and durability. So they create solid plastic frames like these....
We are hoping the soft pink color will entice strangers to stop using the pronoun "he". lol
Monday, February 6, 2012
Softball anyone?
I had no idea that catching things early in the eye's development could be SO important, but if our doctor's enthusiasm is anything to go by its SUPER important. Apparently much of human depth perception is formed in the first year of life, and by the time she (or any opthamologist) sees most babies, the damage is already done. She was practically glowing with excitement after the exam when she said, "I know I am treating this aggressively, but you have to understand, you brought her in early and this is a baby I can actually HELP!"
She was very pleased that the optic nerve showed no swelling and wasn't pale like it had suffered any injury at all from Evangeline's hydrocephalus. She is still concerned that there might be a "brain/muscle" problem where the brain is sending the wrong signal or the muscle is hearing that signal wrongly and its this miscommunication that keeps the eye turned in toward the nose. The only treatment for this muscle problem is a surgery. The surgery won't leave a scar and will correct the problem if it is called for. We won't know if its called for though, until we see if this aggressive patches-and-glasses therapy works. A decision will be made sometime between 6 and 12 months regarding if surgery is warranted.
For right now, she will be sporting a patch for one to two hours a day and will be styling in some lovely frames (I hope to find some real cuties!) when she isn't sleeping. The glasses are for farsightedness. Most babies are farsighted so that by itself isn't unusual, but hers, while still in a range of normal, is enough that it might be the cause of her left eye turning in when it tries to focus on things up close. So by using the patches and the glasses we are sure to help the problem if it can be helped non surgically!
This is great news because, as the doctor explained, this means she will be able to keep her depth perception and everything that stems from it like hand-eye coordination. Which of course will come in handy one day if she wants to try her hands or feet at sports in the future.
For now, anytime she rubs her eye patch pathetically or turns her little head trying to escape it, I must remember that what I am doing is furthering her possible future college scholarship as a softball pitcher. After all, she will know as good as anybody that life is all about how you handle the curve balls.
Wednesday, February 1, 2012
Upcoming Spinal Defects Clinic
This is just an update for those of you who may not know what a spinal defect clinic is. It is often called a "spina bifida" clinic, but no matter what you call it, its an all day doctor-palooza. In Florida there are three such clinics: one in Jacksonville, one in Orlando and one in Tampa. So families from North Florida and the panhandle attend the Jacksonville clinic when it runs. It happens several times a year. In the beginning a child may be seen twice a year. After he/she gets older, they may go only once a year. Our first clinic will be Feb 10th. We will spend the day before at Nemours getting kidney ultrasounds to check for reflux (to determine if we need to start cathing her) and we will also get a back x-ray to check for signs of early scoliosis. They will want those tests when they examine her.
Then, the next day is clinic!
We will arrive at clinic at 12:30 and be assigned a room. We'll have our snacks and some books or magazines with us, along with some toys to entertain Evangeline since we'll be there all afternoon. Each of the doctors (some of whom we have never met before) will rotate through and visit us in our little room. We will be seeing orthopedics, urology, GI, developmental pediatrics, neurology, neurosurgery, social workers and MORE! At the end of the day, all the doctors, nurses and other practicioners meet and compare notes on each patient. From that meeting a report is generated that looks at the whole child. We will get a copy of that report a couple of weeks after clinic.
Naturally this experience is convenient in that we can see everybody at once and advantageous in that the doctors actually get to talk to one another about Evangeline; however, it is still kind of nerve wracking because you never know what may result out of such a clinic. They may decide to add in additional treatments, change an opinion about an existing situation etc. My biggest concern is urology. I am not sure how they will want to handle her frequent bladder infections. They may do nothing because she doesn't run a fever with them (they are asymptomatic). Or they may want place her on preventative bactrum or begin catheterizing her once or twice a day. None of these options are bad, they are just nerve wracking as I am stressed out trying to figure out what is best for her. It will be nice when she is old enough to voice opinions on such matters for herself.
In related news, I am still trying to get the insurance waivers sorted out to get in to see the opthamologist... and I am also having problems getting her PT eval scheduled. Although, I do hope to get those both scheduled soon. Her right leg is so strong that she gets really close to pushing herself over during tummy time, but her left legs doesn't do much but stay locked into place. I don't want to neglect anything I should be doing to encourage her left leg to do what it should be doing! So I wish I could just contact the PT myself, but on her insurance Early Steps seems to be the only game in town for those types of services. I must remind myself to be patient. :) So, that is our update. Pray with us for a positive clinic experience. I will report back here when we get the results. :)
Meanwhile, here are some verses from one of my favorite OT books... Isaiah. Its something I am meditating on as I contemplate where I am heading and what God wants for my family and every family out there. Sometimes we can't imagine the destination cause the journey is kinda screwy, but goodness is out there...and we are heading someplace good...to that Place of God's Desire... we just have to keep on walking, running, cycling, swimming, or rolling towards that destination.
Isaiah:55:8-13
“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
10 As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
12 You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.
13 Instead of the thornbush will grow the juniper,
and instead of briers the myrtle will grow.
This will be for the LORD’s renown,
for an everlasting sign,
that will endure forever.”
Then, the next day is clinic!
We will arrive at clinic at 12:30 and be assigned a room. We'll have our snacks and some books or magazines with us, along with some toys to entertain Evangeline since we'll be there all afternoon. Each of the doctors (some of whom we have never met before) will rotate through and visit us in our little room. We will be seeing orthopedics, urology, GI, developmental pediatrics, neurology, neurosurgery, social workers and MORE! At the end of the day, all the doctors, nurses and other practicioners meet and compare notes on each patient. From that meeting a report is generated that looks at the whole child. We will get a copy of that report a couple of weeks after clinic.
Naturally this experience is convenient in that we can see everybody at once and advantageous in that the doctors actually get to talk to one another about Evangeline; however, it is still kind of nerve wracking because you never know what may result out of such a clinic. They may decide to add in additional treatments, change an opinion about an existing situation etc. My biggest concern is urology. I am not sure how they will want to handle her frequent bladder infections. They may do nothing because she doesn't run a fever with them (they are asymptomatic). Or they may want place her on preventative bactrum or begin catheterizing her once or twice a day. None of these options are bad, they are just nerve wracking as I am stressed out trying to figure out what is best for her. It will be nice when she is old enough to voice opinions on such matters for herself.
In related news, I am still trying to get the insurance waivers sorted out to get in to see the opthamologist... and I am also having problems getting her PT eval scheduled. Although, I do hope to get those both scheduled soon. Her right leg is so strong that she gets really close to pushing herself over during tummy time, but her left legs doesn't do much but stay locked into place. I don't want to neglect anything I should be doing to encourage her left leg to do what it should be doing! So I wish I could just contact the PT myself, but on her insurance Early Steps seems to be the only game in town for those types of services. I must remind myself to be patient. :) So, that is our update. Pray with us for a positive clinic experience. I will report back here when we get the results. :)
Meanwhile, here are some verses from one of my favorite OT books... Isaiah. Its something I am meditating on as I contemplate where I am heading and what God wants for my family and every family out there. Sometimes we can't imagine the destination cause the journey is kinda screwy, but goodness is out there...and we are heading someplace good...to that Place of God's Desire... we just have to keep on walking, running, cycling, swimming, or rolling towards that destination.
Isaiah:55:8-13
“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
10 As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
12 You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.
13 Instead of the thornbush will grow the juniper,
and instead of briers the myrtle will grow.
This will be for the LORD’s renown,
for an everlasting sign,
that will endure forever.”
Wednesday, January 25, 2012
Special Forces
I was sitting there moping tonight, pondering the steps I'll need to take to get Evangeline a referral to see an opthamologist over at Nemours. Her right eye wants to turn in toward her nose. It seems to me like a mild case of strabismus, commonly known as "lazy eye". I looked it up and according to the hydrocephalus association, it can occur when pressure is/was placed on the optic nerve, specifically "the sixth nerve" which pulls the eye away from the nose. The problem can usually be corrected by an eye patch, but in some instances surgery is required. You may be asking yourself why I am diagnosing my child. The answer is simple. Because I can. I only need a licenced physician to assist me with determining severity and treatment options. You see, something else has occurred to me as I was sitting there, dipping my toes in the waters of depression, deciding if I wanted to jump in and swim around for a while. It occurred to me that like a lot of you out there... I am one crazy, butt-kicking momma.
A few years ago, I felt like I entered basic life/combat training. I broke my ankle, shattered it really, and had 9 pins, a plate and some cadaver bone installed to patch it back together again. I was four months non-weight bearing and got a pretty solid taste of how freaking annoying it can be to go somewhere that doesn't have wheelchair access at the curb. Because lets face it, hopping around on one leg is for kids and teenagers. When you haven't got much skill with them, crutches freaking hurt your arms! Then just a little bit after that my husband hurt his back; a piece of disk at his L4-L5 broke off and pressed against his spine. He lost feeling in part of his left leg and foot and was in a great deal of pain till a good surgeon went in and removed the floating piece. His recovery was long and grueling. During that time, we lost a lot of "stuff", our faith was stretched, our marriage was tested. Somehow, we made it through that boot camp. I thought the worst of it was over. I thought there was time to breathe, but nope. Turns out that somebody thought I had what it takes to go further...and that somebody signed me (and him) up for special forces training.
You know the kind of training I mean. The break-a-chopstick-in-half-and-immediately-recognize-three-different-ways-to-kill-somebody-with-each-of-the-pieces kind of training. If life had a special forces team...a team whose purpose was to survive any obstacle...then special needs parents would be just such a team. We have to learn to recognize and quickly respond to symptoms that could potentially be life-threatening. We have to attend to minute details like how many times our child poops in a day- because those details matter- and there is nobody else who can attend to them. We go through decisions, trials and stress that a lot of people don't even want to talk about. We cry tears, feel fear, press through. Nobody else can understand why we spend sleepless nights, why we eneter their bedrooms just to see them breathing, why our hearts shudder or break or soar depending on how the appointment went... except for our fellow brothers and sisters in arms. Most parents prefer to believe that we don't even exist. They don't want to ever imagine that they could BE us. We do what we do for future generations with no fanfare. If we had a motto it would just like the marine corps.... Improvise! Adapt! Overcome!
Yes, it can get wild and woolly out in the field, it can get dirty in the trenches, it can get scary when the diagnoses start flying over our heads. But our pay is in smiles. The medals pinned on our uniforms are pictures of our children doing those things we were told they would never do. The reward for our vigilance is a healthy child, because we caught things early. Everything we do is worth it. Every time we pull ourselves back up out of the dirt and into the fight, we score a victory over the condition that tries to keep us and our children down. Every time we walk away from the waters of depression- that river of tears imbued wth a siren's song- we win. Every time we find the simple joy in just being called "Mommy"or "Daddy" our enemy cringes in terror.
So, yes, life can seem disheartening on nights like tonight when one more thing tries to throw itself on my over-flowing plate. But then I have to remember who I am. I am MOM. Nay, I am special forces, special-needs MOM! I can handle this and so much more. I have passed that special training. I am care-taker to the most marvelous little creature I could ever dream up! So..... I Improvise (Lazy eye? No problem, we put the patch on her eye and tell people she's the mascot of a local pirate crew and teach her to yell YAR!). I adapt (problem? What problem?) I overcome (I give my baby snuggles and kisses). I live and I laugh and I win! That's who I am. Do not make me get the chopsticks. Hoo-Rah!
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