Accepting the plan I can't change.

For the last few days, I've been trying to figure out if there was anything I could have done differently in Bunny's life.  I know it sounds absolutely crazy, but I also can't help but wonder if I could have done anything to prevent Bunny's list of diagnoses, specifically Rhombencephalosynapsis.  It is said that this abnormality occurs between the 28th and 44th day of gestation.  Maybe I should have drunk less coffee during my pregnancy.  Maybe I should have exercised more.  Maybe I should have found out I was pregnant sooner. Maybe I had no control over it.  I am a person of faith, so questioning God's creation seems like a desperate attempt at understanding His plan, and it is.  I'm reaching for straws at this point.  I want to understand.  I want to know.  I want to change the plan, even if I don't know what all it entails yet.  I want to heal my child.  I know I don't like where it's going, and that's all my mind can process right now.  Maybe I'm just tired.

For the first seven months of Bunny's life, I didn't sleep for more than an hour at a time.  Every other hour around the clock, I had to attempt to feed her, with a syringe, for an hour.  The goal was to get her to take 5 ml of milk in an hour.  She never reached that goal.  She couldn't.  She was unable to suck or swallow.  Who knew babies could be born without that natural skill? She also cried a lot, and I mean a lot.  She was starving, miserable, and weak.  Doctor after doctor denied her of a feeding tube because "it wouldn't change the outcome of her life."  I remember one night I sent her dad to the pharmacy at two in the morning to purchase every over-the-counter infant medicine there was to see if we could calm her.  Warm baths, swaddling, cuddling, singing, playing, gas drops, Tylenol, nothing worked.  I sat on the couch with her in my arms and cried with her.  I don't know which one of us made more noise, but it wasn't a pretty sight.  I was helpless.  I couldn't "fix" her, and there wasn't a person on the planet that could.  In her seventh month, I took it upon myself to schedule a neurology appointment because, at the time, her primary doctor refused to treat her at all.  He wouldn't write an order for medications, therapy, specialist consultations, or anything else that would have helped her.  Sadly, to this day, he still oversees the care of hundreds of babies in East Texas.  At Bunny's first neurology appointment, she was provided with an NG tube and an epilepsy diagnosis.  The neurologist was floored that my seven-month-old child was eight pounds, seizing left and right, and still alive.  As scary as that tube and diagnosis were, there was a sense of relief.  We figured it out.  Bunny would be all better now.  Goodness, I was so naive.

Her first EEG and feeding accessory.

Here we are, four years, many sleepless nights, seizures, and diagnoses later.  Four years ago, there was a fight in Bunny no one could deny.  Every time a doctor gave up on her, she flipped it around, reached another milestone, and smiled while doing it.  She's had numerous feeding tubes, hundreds and hundreds of seizures, endless medications, countless diagnoses, hospital stays, ambulance rides, a helicopter ride, and nonstop vomiting in her life.  What I've come to realize is that it is selfish to beg her to keep fighting.  I won't say how many times I've discussed this with her, but I've begged, and begged, and begged her to keep going.  I've asked for a little bit longer, and when I get that, I ask for a little more.  She has some good days still, and I hold onto those, but she also has some very bad ones.  Days I wouldn't be able to face time and time again, but she does.  She is the epitome of strength.  I pray I can be as strong and courageous as she is one day.  I pray she knows how truly brave she is.  I pray she feels at peace when God calls her home.  I pray I can learn to accept His plan even if I don't know how it's going to turn out.

Blessings and Bunny love,

Whitney

We will praise Him even if the healing doesn't come.

I have rewritten this post a few too many times and the words still don't seem right.  They aren't flowing like they normally do.  There is no anger, tears, or joy behind the sound of my fingers tapping the keyboard.  No matter how many times I write this blog, there's no relief.  I feel like I need to do it regardless.  I need to get the words out so they can sink in, and then we can move forward.  That's what we're going to do.  We're going to move forward just like we've done for the last four and a half years.

Aralyn has not been well.  She hasn't been well for a few months.  She's alive, breathing, and smiling for the most part so I shouldn't complain, but she isn't where she was or could be.  For years, we have focused on her Trisomy 8 diagnosis.  We've treated the symptoms, raised awareness, and joined an extremely caring and supportive community.  What we haven't focused on is the diagnosis I despise more than anything.  Rhombencephalosynapsis.  What is said about Rhombecephalosynapsis? 

  "Patients usually have developmental delay, abnormal equilibrium, and seizures. Probable other symptoms include convergent strabismus, optic nerve atrophy, spastic quadriparesis, behavioral disorders, dysarthria, and apraxia. Most cases are seen in infancy or childhood.  Life expectancy is variable, but most patients die early in life during childhood."  

"Intellectual impairment and life expectancy are variable, although many affected individuals die in infancy and early childhood."

We don't know if Aralyn's Rhombencephalosynapsis was caused by her Trisomy 8, or if it just happened, but it did either way.  Her precious brain didn't form the way it should have to thrive.  It didn't develop all the right bits and pieces to function "normally."  Her brain was created perfectly for her by Him, but not in a way that could sustain a long life.  This all leads me to yesterday's conversation.  Aralyn has had a change in her seizure pattern.  That's always a sign that something is not right, and something needs to be done quickly.  Some seizures are quick while others drag out, and she stops breathing.  Every seizure causes damage to her already delicate brain.  Her medications have to be changed regularly, and the doses have to be increased, but still, the medications can only do so much.  We have been reaching out to her Neurologist regularly to voice our concerns lately, and we haven't gotten much in response.  In the last few months, her scheduled appointment with her Neurologist has been rescheduled multiple times.  Yesterday, her appointment was pushed back to November.  I finally had enough and demanded to speak with a nurse.  Now, I regret that.  The nurse, the poor messenger, didn't know how to have the conversation with me.  I wanted answers.  I demanded answers.  I wanted to know why no one cared that Aralyn was struggling.  I wanted to know why my nurses were calling and not getting feedback.  I want to know why the seizures and constant vomiting won't stop.  I wanted to know why Aralyn's Neurologist didn't want to see her sooner.  Twenty-four hours later, I can sympathize with her response and with her position, but at that moment, time stood still.  It's the Neurologists belief based on Aralyn's current status, changes in behavior, changes in seizure activity, and overall health that Aralyn "doesn't have much time left."  Please explain to me what that means. Are we talking weeks, months, a year?  I have no idea.  What I do know is that I feel bad for the nurse who had to relay that message to me over the phone.  One, respect my child's life enough to tell me in person.  Two, respect me enough to tell me in person.  Three, how dare you give me this information over the phone! I get she's "terminal," but all Trisomy kids are said to be terminal.  That's when the reminder came.  Aralyn has Rhombencephalosynapsis.  Her Neurologist hasn't even been focused on that extra eighth chromosome, and I haven't thought much about the RES diagnosis.  The Neurologist has.  With all that being said, Aralyn's Neurologist feels that we're at a point where treating symptoms will no longer do the trick.  She believes we're near the end.  So, like any parent in denial and disbelief, I'm searching for a second opinion.  Humor me, please.  Don't let this be the end.  I'm not ready.  In two weeks, Aralyn will be going to have yet another EEG done.  Those results will not be sent to the Neurologist mentioned above, but to her new Neurologist.  One who believes he can help.  One who gives me hope.  One who believes that if we can get Aralyn's seizures under control, she will have a chance to rest and recover in between.  Aralyn has fought for 1,718 days, and I'm not going to give up on her now.  I'm at peace with her diagnoses, I'm at peace with her journey, but I will never be at peace with giving up even if the healing doesn't come.  Please be in prayer.  If this is God's plan, if He is ready, I pray peace overcomes me.  I pray the remainder of her life, no matter how long, is full of joy, love, and comfort.

Blessings and Bunny love,

Whitney