Hold your babies tight and I will hold mine tighter.

It's been quite a while since my last blog.  I guess you can say A LOT has gone on since I last poured my heart out on the computer keyboard.  Most of you have been following my ever so brief but frightening updates on facebook about Carsen's craniotomy, diagnosis of Infantile spasms, Feeding tube placement, ear infections, and most recently adrenal crisis in which we were inches from losing our precious child.  Needless to say its been a rough 6-7 months for Carsen. She had lost her smile for a long long time and we were cursed with days filled with her screaming, sleeping, and not wanting to be touched.  About two months ago, after her adrenal crisis, we saw our first glimpse of the Carsen we remembered before all the pain and torture.  She was smiling, laughing and for the first time EVER in her life she was babbling.  I was hearing her make sounds I had never heard come from her mouth.  Finally I breathed in a deep sigh of relief and thought "yes, there she is!"  I knew she was in there some where fighting to get out, fighting against all the seizures, and fog, fighting against the pain of an overgrown cyst in her brain, and fighting illnesses that continuously threatened to take her from us. Yes......Finally  I believed we were in the clear and uphill bound.  Over the past month I have been calling family members excitedly explaining how incredible Carsen's transformation has been, and that the greatest moments of her short existence are finally upon us.

I wish I could say this is still the case.  Carsen has seemed to be reverting back to her old ways of constant crying out, not wanting to be touched and screaming during every bath or diaper change.  I have to mention that for those of you who are not mothers, the most difficult thing to do is watch your child cry in pain and agony all day and all night long without a single inkling as to what could be wrong with them. Additionally I have to mention that if you are not a mother of a special needs child, the most difficult thing to do is watch your child cry in pain and agony all day and all night long while also wondering if this night might be the last time you walk into her room to find her breathing.

 I recently had a conversation with Carsens neurologist about why I have NEVER seen Carsen sick.  Meaning as far as I know she has never had a cold, the flu, nothing.  He explained that Carsen's brain is so incapable of functioning appropriately that it doesn't even know how to make her body show symptoms of an illness.  Meaning that if Carsen has a cold her brain does not know how to trigger a runny nose, a cough, watery eyes, or stuffed nose.  Ignorantly up until now I was unaware of how much your brain actually controls.  Now I know the answer is your brain controls EVERYTHING.  It is the central command post.  It initiates everything that happens with your body.  Carsen had her adrenal crisis because she had been sick for a very long time, who knows what with, and we had no idea.  Our only clue that something was wrong with her was because of the constant crying which we were continuously told was because of the craniotomy and that her emotions were uncontrollable.  The scariest thing about our conversation with her Neurologist was that because Carsen's body does not know how to show that it is sick, nor does it know how to fight illnesses when they attack her, if Carsen ends up sick, her brain is incapable of telling her lungs to take deep breaths, or to cough. Her brain is incapable of bringing up her blood pressure, or bringing down her sodium, and it is incapable of remembering how to bring her body back to health. Thus it is crucial to take every fever, and irritable attitude seriously because every treatment moment that we miss could be her last.

Feel the pain in my heart as you read this. For three days now Carsen has been crying all day and all night.   For three days now I have gone into her room every hour through the night to feel her forehead and place my hand on her chest to make sure she is still breathing.

Tonight for the first time in a very long time I witnessed my husband sitting next to me sobbing with his head in his hands.  He had just given her a bath which he rarely does because she is usually bathed before he gets home from work.  She screamed through the entire thing.  This is not unusual for her to do, but at some point the screaming affects your soul like you wouldn't believe.  Not knowing what could be wrong with her raises a level of anxiety that is indescribable.  When I asked him why he was crying he responded saying " I just want her to feel okay."  Words spoken out of pure love for his daughter.  He just wants her to feel okay.  "As do I my love,"  was my only response as I was unable to explain how I really felt about the situation which was, "I hope she is still alive when I check on her tonight."  No parent should have to go to bed hoping their child will make it through the night.  My fear has gone from hoping Carsen walks in her lifetime to hoping Carsen makes it another day. Yes, Carsen does not walk, she does not talk, sit up on her own, roll over, she is blind, deaf in one ear, has cerebral palsy, and the left side of her body has stopped growing, blah blah blah....she is still alive and that I can be thankful for.



So as of today we have exhausted all probable causes for her crying.  She is being treated for a tummy bug, her ears have been checked, she has been given Tylenol every four hours for three days hoping to mask teething pains, she has no fever, no runny nose, no cough. Now all we can do is wait.  Wait for her to magically get better, or wait for our next trip to Omaha Children's hospital where we will watch our baby fight for her life for two weeks or more, cause unknown.  Tonight and every night ahead, I will be checking for fevers, heart rate, and breathing. 

Hold your babies tight friends, and I will hold mine tighter.  Good night.