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...
   

   
   

Weight...among other things!

Happy New Year!! This is the time of the year when we start seeing all the commercials promoting diet plans, exercise equipment,  quick weight loss pills, shakes, sprinkles, etc...  We've all seen them, and most of us adults are tempted to try them because we need to or just from the mere popularity of them.  Some of our children could even benefit from a form of weight loss that is healthy and for life not fad.

My little one is the complete opposite, and on a mostly liquid, soft or puree diet; we've been on a battle with weight for some time now! God knows I'm doing my best and will continue to do so.  It just seems so frustrating when it seems as if my best isn't close to being enough.  In my eyes and mind!  In all of this, I can say that she has gained 1 pound from her December check to the January weight check.  I am so thankful to God for that, it just doesn't seem like it's enough for me though.

 It seems that way because we've had to deal with the development of a pressure area on her rear.  Due in part to the weight loss and a bony prominence! You don't know the tears I've shed in light of this. We've had to go get the cushion in her wheelchair "feathered" and cut to have a softer spot.  Her position is changed every so often, she's kept dry...things I was doing and it still happened.  OT doesn't want her seated on a "doughnut cushion" because of the risk of pulling and causing even more irritation.

Through all of this, we're still prayerful and very trusting that tings will continue to work in our favor.  Kerstin WILL continue to gain weight, the pressure area will clear!  I am so proud of my daughter and love her dearly!  She is making great strides at work on her Dynavox...had to treat her to something from her fave store, Target!