Things I wish I did NOT know much about!

     There is a saying, "You learn something new everyday!"  True! There are some things I wish I did not know much about!  Since Kerstin's diagnosis back in June 2002 it has be big emotional, educational and at times very stressful roller coaster.

     I feel like I have so many professions all rolled into to one, ME!  I am a cook/housekeeper/butler, chauffeur, paraprofessional, nurse/caregiver, secretary, personal shopper, therapist (physical, occupational...), consoler...most of all MOM!  24-7 the duties of a mom is never ending.

     Since the diagnosis of Cerebral Palsy, we have been faced with so many other diagnoses and terminology it gets pretty hard to keep up with it all.  At the start, Cerebral Palsy...I was a two something mom, first child, and to hear at her 6 month check up that she may have a mild to severe case of cerebral palsy was shocking and very hurtful!  I had no idea what it was, what to expect, what it would do to my daughter.  To be clear, if there was/is a question...Cerebral Palsy is NOT contagious!

     Cerebral Palsy:  is like an umbrella, covering a few forms of motor conditions that affects the development.  Cerebral refers to the cerebrum of the brain.  Palsy is uncontrolled movements of the body.
There are different types of Cerebral Palsy (CP); spastic, ataxic, athetoid and mixed.   We would have to see a neurologist to determine the type; Spastic quad.

     After that first diagnosis there came so many terms I needed to be aware of, so many doctors Kerstin would have to see.  Never imagined the journey we would be on.  I had heard of seizures before.  Never thought I would witness one firsthand, and it be my child fully convulsed.  April 15, 2004, is not a night I will long forget.  Epilepsy!  Another diagnosis, she will have to be followed closely by the neurologist. At first, it was thought that her seizures were febrile, then pain related, not so much the case.  She has been having unprovoked seizures.  Recently having a few small seizures, four in the past week.  Her Depekene dosage has been increased by 1 mL.

     More terms I'm becoming an expert at and wish I wasn't:  Atelectasis, bilateral triple arthrodesis, bolus, chest percussion therapy (CPT), gastrostomy tube (g-tube), pulmonologist, scoliosis, Dandy Walker Syndrome, developmental delay, dysphagia, failure to thrive (FTT), seizure disorder...
Raising a child with special health, medical and education needs is no easy task for anyone.  Place this task on a single parent and it can be overwhelming.  I am doing my best.  I constantly pray for the strength to do all that I can and to have the patience to do so.

   Please keep us in your thoughts and prayers!

More to come...
   

   
   

Coming to terms? Not really!

     Well, I thought I was "coming to terms" with the idea of Kerstin's upcoming surgery...now 25 days away.  This is not exactly the case.  It seems the closer it gets the more stressed I become.  I'm feeding her and fighting back the tears because all I can think about is, "How will they have her laying while they perform the surgery on her back?"  "How out of it will she be once the surgery is over?"  "Will she be in much pain?"  So many questions, that I don't have the answers to.  I do know that her surgery will be no less than three hours, meaning it will be some time before I will be able to see her once they take her back. She will be given anesthesia, it has to kick in before they can start, she will be in surgery for a few hours, then in recovery before I can see her.  After that she will be in the pediatric intensive care unit (PICU) for at least the first night afterwards.

     Everything is becoming so real now that all of the doctor's offices are calling to remind us of the many pre-op appointments she has coming up.  There is a full day ahead of us this coming Monday.  The day will start with an x-ray of her spine followed by a CT of Thoracic and Lumbar spine, first ever visit to a pulmonologist, a follow up with neurology all followed by APASS (Anesthesia Pre-Admit Screening Service).  What a day it will be!

     I'm praying daily for the strength to carry on, but I feel so weak and helpless at times.  When she's moaning and I don't know what is going on or what I can do to console her and make it better.  When her arms or legs are shaking and there's nothing I can do to stop it.  No matter what I do at that very moment, nothing seems to help...there's nothing I can do but cry and pray!  It is very hard, most of the time.  No matter what's going on, how I feel...it seems like there's no break, no sick days for me!  So, I press forward.

Home away from home, in a few weeks. 

 
More to come...