Welcome 2015!

It has been a year since I've blogged. What can I say? Life gets busy. lol. I'll spare the words and share pictures instead of some of the fun and adventures we had in 2014.

   

Stem Cells and Spina Bifida

When you want to conduct research on human subjects at a university or a hospital, you must first pass rigorous inspection by an IRB (Institutional Review Board). The job of the IRB is to look at the ethics of your proposal as well as weigh the potential risks vs. the potential benefits to the participants. Naturally, when we began to consider stem cell treatments for Evangeline we knew there would be a lot of information to go over so we formed our own family “IRB” which would consist of voting members.

The information compiled here is not intended to serve as either medical advice or an endorsement or rejection of the idea of using stem cell transplants as offered abroad.  The subject of stem cells is highly charged.  It is not my intention to be offensive or to cast any disparagement on anybody’s deeply held beliefs. I am simply being a scientist, putting forth ALL the research I could find on the subject as it pertains to what we are considering for Evangeline. At the time I write this our family IRB board has not voted. According to the rules we set forth before our scheduled meeting date, in the interest of erring on the side of caution we need a unanimous vote in order to proceed with the treatment.  

·         First, I could not find ANY research existing ANYWHERE about stems cells and spina bifida. This doesn’t mean such research doesn’t exist but it does mean it’s not readily found via typical search routes. 

·         The research I could find was based on Spinal Cord Injury (SCI). SCI is not analogous to spina bifida. In SCI the individual had a perfectly formed and functional spinal cord that was damaged. In spina bifida the cord is not fully formed or functional. Though it varies on a case by case basis, many children and adults with spina bifida have nerves that don’t connect to anything or never formed at all. There is nothing in science anywhere that says stem cells can grow or reconnect nerves.  However, in addition to having nerves that are not there/not connected, individuals with spina bifida (to varying degrees) do have formed and functional nerves that were damaged either during prenatal exposure to amniotic fluid or during closure surgeries/tethered cord surgeries.  So, if stem cells ever fully “cure” SCI, they will not ever fully “cure” spina bifida (and not just because SB isn’t a disease to start with).  The only parts of spina bifida that we can say stem cells will address (based on SCI research) will be those formed but damaged nerves.

·         Most research on SCI (here in the states) is based on “animal models” meaning research involving human subjects is only just beginning.  Animal models don’t tell us as much as a human model would, but they do tell us some things.

·         As I mentioned before research is just now really being done in the US on stem cells. This is likely because stem cells became a “hot topic” in the abortion debate. Some people thought that the only source for stem cells was aborted fetuses. This is not the case. Stem cells originating from a fetus are called “embryonic” stem cells.  “Adult” stem cells can come from the umbilical cord and placenta of a full term baby. You can also get stem cells from bone marrow and fat cells.  Regardless of the reasons, stem cell research was banned for a time and slowed by the controversy surrounding it.   If you want to see what clinical trials are being done on stem cells here in the US go to http://clinicaltrials.gov/ and do a search for stem cells. You will see that there are a couple of thousand underway this time (for SCI as well as some for diabetes, cancer, autism, traumatic brain injury, Alzheimer’s and others). A large one that will eventually be of interest to the SB community when the results return  is on “Safety and Efficacy of Autologous Mesenchymal Stem Cells in Chronic Spinal Cord Injury” (this means they are testing how safe and effective stem cells they get from the patient’s own bone marrow are in treating spinal cord injury).  Most studies are only for those 18 and up and none (as I mentioned before) include individuals with SB…but the results of this study will answer 1) if stem cells are safe and 2) if they help improve function and sensation.

·         Many countries have USED stem cells but have not systematically studied or regulated their effectiveness. Japan has many places for people to get stem cell treatments (from everything to looking younger and growing hair to genuine medical reasons to seek treatment).  Here is an interesting scholarly article on the need to regulate stem cells use in that country http://www.practicalethics.ox.ac.uk/__data/assets/pdf_file/0009/29727/Akabayaski-Fujita.pdf You will see that some side effects from treatment are mentioned such as brain tumors and one individual who had cells injected into her kidney only to grow bone marrow and blood cells there. The article addresses and dismisses many of these cases as either the patient health before injection (one man was 71 years old) or the fact that the wrong kind of stem cells/unprimed cells were injected into the patient.   This article demonstrates that while stem cells are generally low-risk, there can be rare but serious side effects if the practitioner administering the cells is hap hazard in how they are handled or does not properly make sure the patient is healthy.

·         There is a FREE on-line peer reviewed scholarly journal called Journal of Stem Cell Research and Therapy which  does update with new articles http://www.omicsonline.org/stem-cell-research-therapy.php

·         I got a LOT of info from this article. http://www.omicsonline.org/stem-cell-research-therapy.php It is a meta analysis of several hundred animal studies on SCI.  A meta analysis is where they look at many studies and create complex mathematical models that show trends and explain the differences in study results.  Because meta analysis includes multiple studies it is considered the gold standard of research statistics and often tell us more than any single study. I was very pleased to find this article. Its also recent, being published in 2013. This study found that over all stem cells lead to some improvement in motor and sensation, although for whatever reason males had greater improvement than females.  When researchers didn’t know which group of mice got the stem cells, efficacy scores were lower.  Injection of cells by IV vs direct injection to the spine showed slightly more improvement. While the type of manipulation to the stem cells before injection DID NOT affect motor scores, it DID affect sensory scores.  Animals injected with cells which were pre-differentiated (primed to be a specific kind of cell) had a greater increase in sensation after injection with the cells. Even the type of anesthetic used during the various studies seemed to have an effect on how much the cells impacted recovery.  

·         The conclusion we can draw is that YES, stem cells are beneficial in SCI. The degree to which they are beneficial varies greatly and how that translates into helping spinal nerve damage in spina bifida would also likely vary greatly.

·         We cannot ignore what science call “anecdotal evidence” or “case study”.  This is considered the least generalizable form of research in science (meaning it doesn’t tell you much about how everybody else will respond to a treatment, only how one individual does.  Enough case studies taken together though can be more generalizable).  Many individuals have taken their children (or themselves) over to other countries for stem cell treatment. Most have reported some improvement ranging from mild to WOW.  On one hand this confirms the research studies-  stems cells help but results vary.  One the other hand, you cannot ignore what is called “confirmation bias”. That’s a fancy psychological term that means people generally find what they are looking for. Since these programs cost so much, the individuals who go for the treatment are invested and looking for results. There is a chance that those seeing only very mild results do not actually have any documentable change in either sensation or movement. This is likely NOT because stem cells do nothing, but may be because some places that administer them are less than reputable.   60 minutes did an investigation of certain companies offering stem cell therapy and found that many had stem cells that were not even ALIVE. They were administering useless dead cells that wouldn’t do more than grow your fingernails.  http://www.cbsnews.com/news/stem-cell-fraud-a-60-minutes-investigation-26-08-2012/   So a big part of the stem cell process is finding an agency that you can TRUST- one that will not take your cash and leave you with nothing.

·         So the information/questions before the Kugler IRB is as follows:

o   Yes, stem cells help SCI; Do we believe we have enough info to say stem cells may help SB?

o   How can we know the company we are using will deliver the product it says it will? (here we would need to set forth guidelines)

o   Do we believe we have the necessary information to minimize “rare but serious side effects” to our daughter through stem cell treatment? (here we need to set forth criterion to minimize risks)

·         After we have addressed the above issues/questions, each member will vote on whether or not we proceed for stem cells for Evangeline at this time.

I hope this information is helpful to you and a place to start your own further research if you want to look into stem cells for your child.

A Little Food For Thought

Some days it gets to me, I won't lie. Spina Bifida is going to be with her forever. There is nothing I can do to "bring back" the feeling she's never had. Nothing I can do to take away the daily rituals she will have to do so she can eliminate waste.  Nothing I can do to ever change the fact that there is a tiny machine in her brain, making a little bump behind her ear...a machine whose only job is to keep her here with us. None of this goes on vacation.  Nobody here lives a day without making changes to adapt to the demands of our new normal. This isn't a disease. It won't go away, though we sure do take lots of medicine. The doctors we see are nice, but they don't usually "get it".  She's not a medical puzzle or a list of hypothetical "if this, then do that" scenarios.  There is never a perfect answer.  We understand now why its called "practicing" medicine. We all do the best we can. I know a lot of my Christian friends thought that the fact that we had faith she would be OK means that everything would be perfect eventually. That these issues would just disappear.  And who doesn't want their problems to disappear like dandelion fluff in the afternoon breeze?

But we were never promised perfect. And faith does not take away every challenge, or frustration or legitimate problem.  Faith just gives you the ability to walk forward and not run off  just because things are tough. I'm beginning to understand that humans aren't really designed for happily ever after. We think we want it but we don't know what to do when we get it.  We stagnate. We fester. Just look at the people who have the finances to do what most off us only dream about.  Most of them use that money in ways that creates problems.  Drugs, thrills, risks.  Its only in challenge that we thrive. Its only when we are pushed that we go forward. We chase happily every after, but like the dog chasing the minivan, we have no plan for what to do if we actually catch it.

 I understand that there are some people who will not stick with me as I go through the daily motions of our particular family challenge.  They will get tired of hearing about E's latest UTI or seizure or this or that. They will wonder why we haven't gotten over it, got the best of it, "won".  They will want to ignore the fact that some challenges just don't go away. That there are some thorns that are never dislodged. Maybe because their own challenges are more easily hidden.  Maybe because they want to believe that we are "doing it wrong" and if they "do it right" they can have their happily ever after without any struggle. Without paying any price. And you know what, I won't blame them. I won't even be offended. Its human nature. But I also know its human nature to stand by what you love. And that the people that love me, BJ and BG, will continue to stand by us as Evangeline grows. Will continue to cheer her on, no matter how many setbacks.


I've said all that to say this..... the people in your life who love you- they will stand by you too when you struggle with your own challenges.  They will cry when you are sad, and be happy when you find success. When your stress and struggle pushes you to stretch yourself, they will cheer you forward.  Don't settle for less. Some people in the Church will give up on you if you don't "act perfectly" after a little while. I'm sorry they are so hard on themselves and you. You won't always find that you can be perfect. Faith doesn't guarantee that. Faith pushes you to try and do your best- and not run when things get tough. BG has taught me that when you make a mis step in life and fall, just keep picking yourself up. You improve each time as long as you don't stop striving. Don't let people bad mouth you for not "winning" at everything. For having something you still struggle with.  God is the only one who doesn't make mistakes.  He didn't make a mistake with you. you aren't a bad person because you struggle. Everybody has struggles.  Some are just more hidden than others. Don't give up. Whatever YOUR struggle, keep trying to overcome.  Let the negative people walk out of your life. Keep moving on.

Fear Not

I had a boss in my early 20s who had a certain quality you don't see too often. When he spoke, people listened. I mean, they obeyed. A retired master chief, he had this sort of tone in his voice, a quality that is hard to describe. But when he spoke to a group of kids even the wise guys in the room followed directions. I distinctly remember this one time, he walked in on a rowdy assembly and issued the order to "sit" and everybody in the room... just sat. I found myself embarrassed that I too, had taken a seat at his tone. Looking around, I saw that every other adult had followed suit. Embarrassed smiles were exchanged between colleagues and shoulders were shrugged. Later there was some teasing in the faculty lounge. It’s funny what even grown people will do without thinking...: Sit. Just because we heard the words- and they weren't even directed at us!




I don't have the same way with kids. Nobody in my class listens because I have a magic tone. I lead them to obedience the long way around. Through encouragement and cajoling and crazy enthusiasm. It's been suggested that I run my class like a pirate crew. I'm in charge not because I am possess some great authority (like the British Military captains ran their ships) but because I'm the only guy on board who knows how to drive the boat. So they let me have my say, trusting I'll get us where we are going and once there they will receive their share of reward. (passing the course or whatever test the state has said they have to take next, etc.)



Now I said that because I need to illustrate a difference. I have always read those "Fear not" verses in the Bible more like a suggestion. Like an encouragement. Like the way I would tell a group of kids not to get scared before a big exam. When in reality, I think maybe they were written more like my old boss said things. Like a command. Like something you just do. Do without thinking or reasoning or cajoling. Like if you read those two words in an authoritative tone... FEAR NOT! There need be no why given. The one who issues the command is big enough to take care of whatever it is you're stressing about.  



I was driving in the car the other day just freaking out about money and the move etc. Certain, ehem, "life events" have drained the savings I squirreled away like a squirrel stashes a nut.  And like a sleep crazed squirrel after a long winters nap, looking for the acorn that is GONE....I have been letting myself spaz and twitch and run around in circles. We still have our minimum summer money put back, but we won't be living as easy as I hoped.

So anyway, I decided to have a little prayer and meditation.  Normally when I go to my meditation.....and let me clarify here. Prayer is when you talk to God.  Meditation is what people do when they are looking for Him to talk back.  I sometimes sit quietly and listen, but usually I will meditate on a verse or two relevant to my situation and I normally I hear some soft voice in my soul remind me, "Fear Not. I got this." and I take the accompanying peace and go. But this time the voice was not soft or encouraging. It was all "FEAR NOT". Raaaaar!  and you know what? I was all "OK!". without even thinking. I nodded my head in agreement.  Just like that time an entire room of adults sat because somebody said "sit", I stopped thinking about what was worrying me.



Sometimes letting go of fear isn't a matter for reason. After all, most of what we are afraid of isn't reasonable to begin with. So why would reason alleviate it? So, next time your reminding yourself not to be afraid. Go ahead and say it with gusto. And to those who share my faith, hear God say it with authority in His voice- not as a suggestion- but as an order....when you read one of my favorite verses in the faith.



"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

Just two pennies of thought from a sleep crazed squirrel. 

How Spina Bifida Changed My Life

Nobody at our house "Suffers" from Spina Bifida. Evangeline was born with it, sure, but I'd hardly call her life a suffering. At least no more than anybody else's. Spina Bifida is and will be part of Evangeline's struggle. And by "struggle" I'm talking about what Dr. King was talking about when he said, "Human progress is neither automatic nor inevitable... Every step toward the goal...requires sacrifice.. and struggle; the tireless exertions and passionate concern of dedicated individuals." We all struggle with things. Our background, our past, our future, our goals. These things give us challenges that cause us to rise above ourselves, push beyond our limits and find the sweetest kind of success- the one that is hard won; the one that costs.




I have been thinking since last night when a Facebook Friend and Disability Advocate asked me to write a little something about how Evangeline's diagnosis has progressed and how Spina Bifida has changed my life (and her daddy's life). And after a lot of thinking, and remembering and crying and laughing, I've decided to tell you my answer; even though after you read this you may come to the irrevocable conclusion that I am profoundly and unalterably nuts.



I want to be VERY clear here in the beginning...I'm not saying I'm thankful for Spina Bifida (I'm not sure I'll ever be able to say that).... but I am thankful for all the things it has brought to my life. And I'm not talking about sleepless nights and doctors appointments. Those things happen but then are over and done and forgotten as life moves on. I'm talking about the things that matter. And that's the first thing Spina Bifida has done for me- its taught me when not to sweat the small stuff. I used to be so uptight and worried about everything. I was an obsessive planner who had a clear definition of "perfect" in all aspects of life and did what I could to achieve that goal. But when I walked into the gender ultrasound at 17 weeks pregnant, I walked out with the knowledge I was having a girl....and I got a little bonus in the form of a diagnosis for my daughter....words I didn't fully understand: Spina Bifida. Oh! Pregnancy was so hard on me. I tell all women that pregnancy is the hardest part of the whole "spina bifida experience". The unknowns will kill you. You teeter on insanity at every appointment (and there are multiple ones a month) waiting for some scan to show you something...anything to answer the million questions you have about this tiny person you are madly in love with. And the answers don't come. Because the only truthful answer you can get is, "Time will tell" or "We don't know". I remember the day the maternal and fetal medicine specialist told me that "as time goes on you will feel her kicking less. This is because the longer the nerves are exposed to the amniotic fluid, the greater the damage to the nerves." I felt so many times like everybody wanted to steal my hope. Here I had just seen her tiny foot flex on the ultrasound. Like she was tapping her foot to the music of my heart or the rumble in my belly from the meal we had just shared. I was all smiles to see her moving and doing well...right up until somebody told me to not get my hopes up. I spent a lot of hours wondering what she was thinking in there... If she would be happy when she got here & trying to imagine what she would need and how I would get it for her. I learned soon enough that imagination is a vicious and wooly beast compared to reality. I could imagine so many things far worse than any reality I have since faced. In my pregnant months, in order to preserve my sanity, I learned to tame my imagination and put down my perpetual planning. I learned to accept each day for what it was and not what I wanted it to be. I let go of a lot of stress. My entire way of seeing the world changed.



During my pregnancy I also found the rebellious teenaged me, the one I thought I'd outgrown. But now that defiant girl had a mission... To hold onto hope, all other things be darned. I told more than one person, with my hand touching my belly and my nose up in the air, "you don't know MY daughter" when they tried to tell me what would go wrong. And I was right. They didn't know her. Her kicking in utero didn't slow down till she was too cramped in there to do much kicking. The last ultrasound they did of her, she flexed her big toe for them. As far as I was concerned, I couldn't have been more pleased than if she'd flipped the bird at every nay-sayer and hope-slasher in the bunch. (It sounds terrible I know, but its true!)



My husband had it right all along. More than one night, we'd crawl into bed after a long day's work and he'd hold my hand and we'd say our prayers and then he'd snuggle up close and put his hand on my belly. She'd kick a few times at the pressure of his hand. "We are lucky," He'd whisper, "That God would give us such a gentle soul." I always smiled and drifted off to sleep peacefully because I knew what he meant. Bj has always said that a person must be strong to be gentle. Hand any man a 10lb weight and tell him to set it gently down on a table, and he can do it. Hand any man a 200lb weight and not all will set it down gently. Most will drop it with a thud. That is because they don't have the strength to do it gently. It’s the same way with human interactions. Weak people will rail and scream and berate others when things don't go their way. They don't have the strength to find another way; they lack the strength to be kind. But the truly strong- the great men and women among us- will find another way to achieve their goals and they will be nice to their neighbors while doing it. We knew that God had gifted us with a strong, gentle and great soul in Evangeline. I knew even then that she would rise to every challenge- that while the going would be hard, it would shape her into a mighty woman of valor.



(Of course, I didn't see a mighty woman of valor when I held her for the first time. I just saw the cutest most amazing 7lb 1oz baby girl EVER!)



And after she was born, the lessons spina bifida taught me were learned and learned again. They rubbed like sandpaper against the rough corners of my life. With each thing we came up against, I let go of more worry. I learned to take joy from the exact moment I was living in and leave the planning behind. I learned to stop obsessively asking questions to which there was no answer. I learned to take things as they come. I learned a kind of strength I never knew was in me. When at four months her ventricles enlarged to the point she needed a shunt, I had learned enough to put my worries aside and be thankful such an invention existed. When her shunt was revised 5 months later, I was just thankful that her surgeon got out of bed before dawn on a weekend to come and take care of her.



Evangeline's journey to mobility has been slow but SO so rewarding. As a family, we have learned to cheer together. Princess sees our clapping as extremely motivational. She doesn't always know what we're excited about, but she will stop and clap along with us. Bouncing up and down with a big baby grin on her face. Evangeline didn't sit up well till 6 months. She didn't roll over till 8. She didn't army crawl till 12months, didn't four point till 16. But each milestone has been call for a riotous celebration. Every small achievement is a reason to call family and cry together for joy. We celebrate victory often. We encourage each other on. Evangeline is still gaining strength in her upper and lower body to pull up and stay standing for long periods. Her custom walker is on order and it will help her take those first few precious steps on her own. That glorious day, her daddy has promised her a parade. We'll all pile in the car and roll the windows down and smile and wave, like she's the festival queen riding on the grandest float in town and we are her attendants. It doesn't matter that the rest of the world isn't celebrating or parading. We can enjoy ourselves anyway! Spina Bifida has brought our family a sense of accomplishment and of working together. When we see Evangeline reaching for something up too high and grunting and trying to get at it- our goal becomes finding a way to help her do it for herself. It takes a lot of daily work on the part of me, Bj, Evangeline, Grammy and Yaya (who watch her while we work) so that she can practice skills in ways that she thinks are fun games. But I can't tell you the sense of satisfaction I feel when I see my daughter kneeling there, grin spread over her face, looking back at me with big blue eyes that say "Look what I got!" as she shows me the book she grabbed off the toy shelf. By herself!



So how has spina bifida changed my life? It’s given me tenacious hope, determined resilience, stronger faith, family goals and a present-focused outlook. Spina Bifda has introduced me to a group of amazing people in the disability community I would never otherwise have met. Some that will be my friends for life. Spina Bifida has shown me the true compassion and faithful support of friends and family. It’s shown me the strength of my little girl. I’m reasonably sure that if I got to pick the struggles in my life and Evangeline's life, these would not be the one's I'd have chosen. But now that I have them, I can confidently say they are manageable and not nearly as frightening as I first thought way back when the doctor first showed me her spine on the ultrasound.



The sound of my daughter's laugh, the "picture" she scrawls in crayon, the way she offers to share random slobbered-on food items with me...all these things are normal- as they would have been if there had never been spina bifida. So, all in all, Sb has changed many things in my life but it has taught me to appreciate and cherish those things it will never alter. The love and the support and the bond between my family, my little girl and me.

Thoughts about being a mom

I hear a lot about how being a special needs mom is difficult.  I want to openly confess here that being ANY kind of mom is difficult.  Its human nature to miss being able to control your own sleep schedule. Its natural to miss that thing...what was it we used to call it?  Oh! "free time".  Yes, its difficult to squeeze in therapies but its no more difficult than some moms who have big families and who try and fit in 4 different sports/hobbies for 4 different kids to try and keep their little ones well rounded.  I guess what I'm trying to say is that special needs moms have more in common with "regular" moms than we have differences.

For example....I know LOTS of women who experience raging cases of mom guilt.   We look at our kids who need a bath and our families who need feeding and our house thats a wreck and our job that, let's face it, is in a bit of chaos.  We always feel like we are running behind or letting somebody down.

I've been suffering from this myself lately.  Its difficult to know that so many things need my attention that it is physically impossible to accomplish them all and still sleep.  I stay exhausted. And most days I feel bad for all the things surrounding me that go undone.  I blame myself.  I try to be "better" and to organize my time to get the most done I possibly can.  In my mind, I imagine that if I could just "do it all" everything would be OK and I would be a good person.  A lot of this type of thinking is fueled by tiredness but regardless of why its there...it can make a difficult situation seem impossible.

Earlier this week I faced a few facts.  Most of us feel this way from time to time and we aren't bad people.  Sometimes there is no easy "win". There is nothing we can do that will allow all the boxes to be checked off at the end of the day.  Nothing we can change about ourselves that will make everything work out perfectly. Nothing we can do that will make everybody happy.  Some days nobody is going to say "thanks" for the stuff you DO manage to finish.  Nobody is going to notice how hard you are trying.  And that's OK.

We have to remember that even though we wear the title "MOM" and bear the awesome responsibility that goes with it....  We are also a woman underneath all that. We have strengths and flaws.  And once upon a time, we measured ourselves and our success very differently.  Yet, we are still fundamentally the same person we used to be before the measuring stick changed.  We are alright. Our families are alright.  Maybe messy, but OK.

This ideal woman/mom that we have in our heads doesn't exist any more than the "ideal" child exists.  My daughter does things on her own timetable and I applaud her for it.  Yet when my own timetable falls behind, I beat myself up.  What exactly will I be teaching her if I keep doing that?! I have to remember the things about myself that make me...me!  Underneath it all, I am a hedonist at heart. I believe that life has enough troubles and if you get a chance to have some fun, you should take it!!  And so what if that philosophy shows up in how organized my space is?  Who is to say that the way I'm doing it is "wrong"?   As long as my daughter is smiling, who cares if I let the laundry go so we can chase a rainbow to try and catch a leprechaun?

The only thing I need to change about who I am is the guilt I have been allowing myself to feel.  I challenge other moms to do the same.  There are lots of stuff we have to do to keep our kids healthy and safe and feeling loved.  But I don't want to ever get so busy or bogged down that I forget to show my daughter how to be spontaneous or fun.


OH! One more thing before I end this post.  Below is a picture of our house that is being built.  We are very excited about it.

Seized!

Dictionary.com defines the word "Seized" as 1) to take hold of suddenly or forcibly; grasp 2) to take possession or control of as if by suddenly laying hold.




I guess that two Sunday nights ago, we all got a little shanghaied. I was in that place between awake and asleep when I heard Evangeline begin to cry... And then make a choking sound. I counted three such cries. I gave the typical "Mommy's coming" as although I could tell she was distressed, I figured that she had simply lost her bink as she slept and was perturbed at its absence upon waking. When I got to her crib, she had one arm up in the air as if she were reaching up to be held but everything else about her appearance was wrong. Her whole body including the extended arm was stiff and vibrating softly, quickly. Her eyes were open and looking at nothing. Her tongue moved behind her lips. I screamed for BJ. "She's having a seizure!" He sat up quicker than I thought possible with a loud and alarmed, "What?!"



My arms reached out to hold her, but seeing her mouth move in that odd way reminded me of some dim fact that I heard long ago....that moving a person having a seizure could cause them to choke. I pulled my arms back, but not all the way. I just stood there like that, half frozen, waiting for it to stop. Just waiting grab her up and hold her; It’s all I could think to do. Bj told me three times to get dressed before I turned from her crib and threw on a pair of jeans and a t-shirt, knowing we were going to Wolfsons. Soon enough it stopped. She was dazed and not crying. In fact, she looked as if she wasn't sure why she was being scooped up and held tightly. She didn't say much on the drive to the hospital. While there, the doctors on duty ruled out a shunt malfunction, excess fluid buildup on the brain and a systemic infection, all of which could have been life threatening.



They released us with the knowledge that it could happen again...or not...and that we were to follow up with neurology on Monday. We got an appointment for a sleep deprived EEG lat Thursday and kept the baby awake all day and afternoon. When she got there, she refused to sleep in a strange place and so they took the reading awake. We have yet to get the results.



Meanwhile, I have been so stressed. In the back of my mind I had this thought that wasn't even a conscious one at first. It went something along the lines of "If I can put her to bed just fine and wake up to find her having a seizure...it is possible I could put her to bed and wake up to find her dead in her crib." The thought made me frightened. It made me sick. When fully formed in my mind, it made me slightly unhinged. On Thursday as I was driving back from the failed EEG at Nemours, I had a total meltdown and vowed to become a monster if anything should ever happen to her. I would unleash that beast that we all cage...the one that doesn't care about anybody. The one that lives for its own ends. The one that feeds on bitterness and spits its words like venom. Every night it was all I could do to leave her in her crib. I knew she slept best in her own bed, but a few nights, my selfish desires to hold her close won out. She slept snuggled in my arms. I was determined to know if she had another seizure and wasn't able to cry out for me.



I was living in a kind of uber stress that couldn't continue but I had no way of resolving it. There were no medical answers. I felt alone..... more afraid that when I got "the diagnosis" of Spina Bifida all those months ago. I had previously thought that impossible to top. But here was my daughter, doing so much better than I could ever dream. Bright, vibrant, full of love and doing little things each day to make me smile. I didn't technically "know" her when I got the diagnosis of SB. I was upset and scared, but not like this, boy, not like this. But I had learned a lot about handling stress. I had been determined during my pregnancy not to feed her my stress hormones. I meditated on positive things and kept busy. This time, I tried the second part and forgot the first.



Well, anyway, I decided to share all this because of a dream I had two nights ago. In my dream I was laying in bed thinking of all the things that I was worried about. Evangeline's life. Evangeline's future. The house we are trying to buy for Evangeline (and us...but mostly its hers lol) and all the stress that comes along with that process. I was thinking about work and all the things I’m behind on because I can't get work done as quickly when all I think about is Evangeline. Well, in my dream I had closed my eyes and tried to shut out everything and just go to sleep, and when I opened them, there was Jesus in bed with me. (for those that are wondering, no he doesn't have long hair like in all those creepy pictures. In my mind, Jesus has a sensible short cut. His hair is dark and his skin is a warm brown) I was SO glad to see him. And I told him so! I was all *deep exhale* "I am SO glad to see you! Where in the world have you been? I can't feel you with me! Its like my prayers are bouncing off some clouds or something.  And do you know that there is ....(here is where I babble on about everything that I feel is blowing up) and I only stop when he opens up his mouth to speak. "Do you think there is a chance you haven't felt like I was hearing your prayers because what's been going on with your daughter is keeping you from feeling much of anything besides upset ?" I conceded that there was a high probability that my stress about Evangeline was feeding every other stress. He then told me that what I needed was to just wait and see because I was worried over nothing. And so I asked him if the seizure was nothing or if the house and work and everything else was nothing? He said they all qualified as nothing. He patted my shoulder and told me it was all going to work out.



I know it was just a dream, but I woke up feeling better. So much better, that I haven't even called and begun neurotically harassing Nemours about the test results. For the first time in a week I don't feel like there is a scream stuck in the back of my throat. She's gonna be OK. Its what He said from the start. I will report back here at the conclusion of testing but I want you all to know this is totally going to work out. Whether you believe that a dream is just your subconscious telling you something or whether a dream can contain a message from "the other side"...you can be sure that either my unconscious or my God knows its all gonna be OK. I’m believing now that its both.

15 Month Update

Boy!  Have I been neglecting my blog updates.  :)

I have started back to teaching and that and my princess have been keeping me busy!  This morning she is playing with daddy on the floor so I have a moment to type. 

Its amazing how much Evangeline has grown and developed these last few months.  Spoons are no longer weapons of mass destruction.  She is so cute when she spoons her oatmeal into her mouth and chomps it with her four little teeth!  She is using a dynamic stander each day to help her bear weight and gain strength.  We were very lucky to have a pre-loved stander that has helped several other little kids on their journey.  It was loaned to us by a mom in our local spina bifida group so we didn't have to wait forever for insurance to pay. 

While in her stander Evangeline uses AFOs, (ankle braces) though when she starts walking she may not need them.  The jury is still out on that one.  Orthopedically she is doing great.  Her most recent urodynamics is still showing best case scenario as far as kidney health.  No reflux, low filling pressure.  She retains urine and has had a few infections but the uro doc still does not want us to cath.

Evangeline army crawls very well now and her "motor planning" continues to improve.  This is a skill that involves moving the upper and lower body in unison and how the child coordinates these movements.  With a little support around the middle she can four point at lightening speed.  We suspect that by the next month she may be able to four point on her own.  Her strength in both her upper and lower body is improving slowly but steadily.  

Her speech has been a little delayed (possibly because she has been making so many motor gains) but we have been working with her and she has added a few new sounds to her repertoire.  Once she mastered the B sound.  It wasn't long before she began saying "Bu-Bu" the name of her grammy's puppy (and her very special friend) Bubba.  Bubba is SO gentile and good with her.  Evangeline loves to share everything with him.  She offers him a toy and he generally refuses, but if she holds out a wooden block, he cant help himself, he'll have a good chew.  She reaches down and offers him food from her highchair, and he is so gentle, if there isn't enough of the food sticking out of her chubby baby hand, he will just put his nose on her hand, not wanting to take it.  Even at restaurants, Evangeline holds down food, just in case Bubba is hiding somewhere and wants to sample what she's got.  These two are inseparable.  She pats him and he comes when she calls.  They certainly are a pair!

As the speech therapist recommended, we are continuing to do exercises to help her become aware of all her facial/mouth muscles.  These exercises involve peanut butter and Evangeline thinks they are totally awesome fun.  Even though Evangeline can't say many words, she knows TONS!  We are already having to spell certain things.  (Bye Bye fore example!)  She adores going bye bye and you better not say the word unless its happening NOW! 

She is still her amazing happy self.  She still loves going to see her doctor friends and will be making a special delivery to many of them next week with thank you cards and Christmas brownies.   She still loves to giggle until everybody else is laughing.  She still adores music and dancing/bopping to tunes of all kinds.  She still grunts/growls in cute ways just like her daddy taught her to.

I guess that is a pretty solid update.  We hope everybody has a happy Christmas!!!

Everything I know about reality....

Everything I know about reality was taught to me by a schizophrenic. Seriously.  The details are a story for another time. Suffice it to say that my early experiences prepared me to see certain things in a different light.  Lots of people think "reality" means the same thing as "fact" or "truth".  I am of a different opinion.  Truth doesn't change and isn't altered by opinion. Facts are also not altered by opinion, though they can change with the discovery of new truth. Reality on the other hand is ENTIRELY based on opinion, is subjective and is, in fact, being written with every word we say and every thought we think.

Reality is simply what two or more people agree to and believe in regards to what they see, hear, feel, taste, touch etc. 

Example: If a schizophrenic hears a voice that no one else can; it is by definition, not real... as nobody else lives in that reality with him. I.E. nobody else agrees they heard an invisible albino anaconda whisper poetry from atop the television set.

As we go through our daily lives sometimes we live in a reality nobody else does and we don't even know it.  In other words, we can experience un-reality without ever experiencing a psychotic break.  Example:  In a class I am teaching, I can give a set of instructions for an assignment. 29 kids are paying attention, listen and respond to what I say. 1 kid is distracted when I am speaking. He hears me say something the others do not.  When the 30 children turn in the assignment at the end of the period, it is obvious the 1 student experienced a different reality.  His assignment is TOTALLY off the mark. If you ask him, he did as instructed.  He just happened to be the only one who heard that particular instruction.

So, you see "reality" is so subjective. It has nothing to do with what actually IS.  It has everything to do with what we perceive (correctly or not) and how that perception then influences our actions, words, conversations, social interactions etc.

I freely admit to establishing my own reality lots of times.  Especially wen it comes to my daughter.  And why shouldn't I?  Everybody else has their own version of her reality.  One PT believes she will not walk without HKFOs.  (Braces that go up to her hips).  Another PT thinks she may only need little braces that slip into her shoes in order to walk. One doctor believes she is "slow to respond" cognitively. Another thinks she's a bright girl.  If I listened to every reality out there about her, my head would be spinning constantly.  A long time ago, I realized that I would need to develop my own reality- based on facts I experience, and also on opinions I have formed.  That reality is that my little girl is capable.  That she is going to surpass expectations. That she is brilliant.  These things for me are real and are unlikely to change just because of some random individual whose reality is a little more full of grey clouds than my own. I KNOW who and what my daughter is and she is magnificent, thank you very much.

I want to say a big old sloppy thank you to all the friends and family who choose to actively participate in that reality with me. Its nice to have you here.  Please feel free to pet the unicorns and if you borrow the magic carpet, leave a note.  I love you all.  To everybody else, you are missing out.  Plus its gonna suck to be wrong when she walks down to receive that Nobel prize.  You might want to consider switching realities now in order to be mentioned in her acceptance speech. 

A comment on crystal balls

"I gave up on crystal balls."  is what Evangeline's doctor told me today during our appointment. He said it with a southern accent and a smile.  I smiled back, genuinely, because I expected that answer. In fact, its the same answer I would have given myself if we were sitting in different chairs....and really.... I knew my question was stupid.  OK, so as an educator, I can never really call a question "stupid", lets just call mine "ill advised".

So, what could I have been asking about to prompt my physician to explain his philosophy of fortune telling? The future, of course!  I wanted to know what sorts of options we might be looking at in a year in regards to Evangeline's potty training.  I KNOW that nobody can predict that right now, but sometimes it is of little consequence what you know.  Sometimes you are just going to blurt things out anyway.

By the time I asked my question, we had been at the clinic for over four hours and without realizing it, all the muscles in my body seemed to tense up with the passing minutes, wound up (as my Nana would say) tighter than Dick's hat band.  I never knew who Dick was, or why he wore his hats too tight, but surely that expression fit my mood today.  Having missed all her recent appointments, I forgot how the tension can weigh on your very bones.  How, the longer you sit there, the more anxiety you feel...with images of your future doing stealth ninja attacks, intruding on your present until the three-month-stale waiting room magazine in your hand phases into a kind of kaleidoscope with images of other, future, waiting rooms all chopped up and pieced together in a random, unbroken string. 

No, I'm not on acid.  I'm just explaining how to those of us with "special needs" children doctor's offices seem like places where time...linear time...is pointless.  We have been there before, are there now, and will be there again.  Its no wonder that things get muddy in regards to asking about the future.  We go there for answers only to be reminded that we are indeed bound by time and doomed like the mere mortals we are to wait for the knowledge we seek.

All humans crave knowledge.  We mistakenly believe that "knowledge is power". Those three words are the single greatest lie to ever be perpetrated on humanity.  Knowledge of the future rarely empowers anybody to do anything....except dread or dream or hope or despair. Just ask ol' Oedipus Rex.  He'll tell you the dangers inherent in seeking out an oracle. The true magic of human existence always happens right where you are.  In the present.  So, I'll just appease myself with waiting, knowing that a magic moment for my daughter will show up exactly when it is needed the most.  We will know what to do only when the time is right. 

For now, we do not need to introduce any catheterizing into her daily routine.  There is no reflux into her kidneys and her filling pressure is normal. On the down side, she is not voiding even half the contents of her bladder basically making a recipe for a petri dish of bacteria, but she has had no serious infections so we are holding steady.  It looks as though her bladder sphincter isn't too strong but it does function to some degree. My concern was and is for the future.  If we will need to cath her to help her with social continence before she starts school at 3, then perhaps we should start now so she will be used to it.  But the doctor is not certain yet what she will or won't need and so he has counseled us to stay the course.  It ain't broke, so let it be.

I tell you, just as I embrace the hippie thought process of living in the moment and taking things as they come, I let a moment of uncertainty or of waiting wind me up and I have to remember the truth all over again.  Crystal Balls and life simply don't mix.  Happy people know that "knowledge" about the future is just a Jedi mind screw. A trick to tempt us into chasing our tails to make the outcome into what we desire. The best knowledge and only truely useful knowledge is the knowledge of the moment. And right now, we know Evangeline is doing just fine.  And that's what matters.

My First week as a full time mom!

My first week home has been eventful and busy.  I attended my first PT session in months and learned how to support her body to help her learn to crawl.  So far its been frustrating for me and her (for me to see her try so hard) and for her…well to have to try so hard! lol  But I can see progress. 

 

We have begun the new “big girl” diet we got from the nutritionist. This is our first week on it; it has less bottles and no more processed baby food. Now she gets egg or yogurt or meat for protein and pretty much all the fruits and veg as she can chomp! We are watching her carbs to make sure they are healthy/whole grain to keep her from gaining any more chub.  At this point we want her to grow into her weight and so far so good.  She hasn’t really gained anything in the last 6 weeks or so but has grown another inch.  So, hurray baby girl and hurray us.  Keeping that weight down will help her in her efforts to crawl. 

 

She got a little case of thrush this week and we had to see the pedi to get some medicine to rub in her mouth.  And, of course, with the addition of more solid foods, we are having to adjust her milk of magnesia dose to make sure she doesn’t get “backed up”.  But so far, so good! 

 

She has certainly noticed that I am home more often and has decided it must be some sort of wacky, awesome perpetual weekend party.  I hear mom, ma, mom, mom, ma ma mum, mom, ma, ma…… well, you get the idea….

 

She is also loving having me around to hold her a LOT.  Apparently, she has been taking notes on my behavior for months.  She must have noticed how I always run to her at night with any little disgruntled sound she makes to put her bink in her mouth and wind up her bear mobile. She has paid attention to how I’m the love-to-cuddle her one who doesn’t force her to hold her own bottle (yes! Guilty!) and so now she has decided that having mom home is an excuse to get her way 24/7.

 

She’s a bright girl and knows what the word “no” means.  As testament to this fact, when we were at the optometrist earlier this week (oh, yeah, we went there too! Lol) she was wearing her glasses for the exam and she went to take them off her face to nom on them and was told “no” and had her hand moved.  The lip came out and trembled a little.  She reached her hand up slowly this time and again it was “no” and her hand was moved.  The eyes teared up and the already-stuck-out lip turned down and trembled even more as she wailed like her heart was crushed.  But…she didn’t try to pull her glasses off again.  She’s such a precious sweet heart!  Lord I love her!!

 

She has also started mimicking simple sounds and words with greater frequency.  Like “up”.  She amazes me with how clever she is.  If you ask her to find her belly, she will grab her chub roll and if you ask her where her belly button is, she will poke one little finger in her belly button and then grin at you like, “Here is is!  Found it!”  I melt at the sight of her smile.  I think she may be right about me- “pushover” is by nature what I am with her….but I am working on making sure I only melt when it won’t turn her into a crazy wild baby with no home training.

 

As for the ophthalmologist, she will still wear her glasses and be patched. I have ordered her some new lenses and she’ll be sporting her little pink frames again soon. In six months we go back to see if we can discontinue them at that time.  They are now only to prevent eye strain in the eye that turned in so that it can continue to strengthen. Her vision is normal.  So, once the right eye is as strong as the left, she won’t need them anymore.

 

Well, I am writing this during naptime (and its gradually drawing to a close) so I better go for now. I will post another update next week cause we have lots more appointments!  We have our yearly urodynamics study which will have us a Nemours all day!  Then our weekly PT and her one year shots and checkup. 

 

Plus, I found out that as an alumni, I can still use UNF’s library to print out some scholarly journals I plan to use as reference materials for the book.   This staying home business is keeping me hopping and I LOVE it! 

Hello, Kitty!

We had Evangeline's first birthday party over labor day weekend.  Her paternal grandparents traveled up from central Florida and my parents were there as well.  Her two godmothers also attended and she had a FABULOUS time! 

I had a darn good day myself! 

Spending Time

Time is a resource. Because it surrounds us, we often don’t see it as a scarce resource…but it is.  Most of us don’t think about the fact that our days are literally numbered or that life, by definition, is a terminal condition.  And that unawareness is healthy. If we walked around thinking of “the end” all the time we would be a woebegone species, incapable of enjoying all the little beginnings around us every day.

 

Still, the idea that time is valuable is a good awareness to have every once in a while. I was sitting in my cube daydreaming about Evangeline the other day, wondering where this first crazy year went.  It hit me like a gut punch when I realized in that moment that there were a thousand moments with her that weren’t coming back to me. No matter how I tried to cram in memories on the weekends, spending 8-12 hours in my cube and 2 hours on the road 5 days a week was a lot of time I was missing. It made me sad but what could I do? Like the song says “I got bills to pay, I got mouths to feed. Aint’ nothin’ in this world for free.”

 

As most of you know, my wonderful husband is now teaching Geometry and Algebra II at a Northside Highschool in Jacksonville.  We were enjoying the idea of becoming *gulp* middle class again.  Two nice incomes means no more standing in line at the grocery store hoping the card goes through. (although….I will kinda miss that gameshow feeling as you smile and cross your fingers while mentally chanting “Big Money!  Come on! Big Money!”  Some of you know what I’m talking about) lol

 

Anyway, as we were getting Evangeline set up at her new PT we became aware that she can still receive her CMS healthcare on his salary. We thought his higher salary would disqualify her but it turns out he’s right under the cap- but add my salary in and it’s too much.  Which got me thinking.  Could we put up with another year of living poor so I can have a year of time with my daughter?  It wasn’t an easy choice, but after talking, prayer and waiting for a peace…. we decided to do it.  This next year, I get to relearn her schedule, watch her grow, work on my book project and just be a mom.  After that its “back to reality” but this year, this precious year, is a gift beyond value to me- worth more than a million bucks.  My husband and my family are giving me the best thing ever.  They are giving me TIME.  Thank you all.  I put my notice in last week. My last day is the 31^st.  Pray for me.  I’m very nervous about mom-ing full time.  Especially because amid the baby activities, I want to make sure I set aside time each week to really throw myself into the “expecting spina bifida” project that has become so close to my heart.    I am excited and determined not to waste a drop of a second of this magical time in my life.