Saturday, February 23, 2013

17 months old - This is the beginning of a difficult but rewarding journey.

This is my first Post. My daughter is 17 now months old and diagnosed on November of 2012 with Cerebral Palsy (Official diagnosis was Cerebral Palsy with Spastic Ataxic Diplegia)  She was born premature at 27 weeks and her weigh was 2lbs at birth.
I have not been able to forget those three words since the moment they were told by the neurologist as she was reading the MRI that revealed why my daughter was still not rolling over, sitting independently, or standing at 15 months old (11 months adjusted).

This is what she does as of today. I know that as parents we look for other kids the same age online with the same diagnoses to see compare milestones, etc.
Verbal: She says about 5 words clearly, and mimics sounds she heras from anyone.
Recognizes brother daddy, and mommy.
Is very smart, can recognize letter A,B,C (I teach her the alphabet on a daily basis as I did with my son)
Moves hand up and down to signal hello or good bye. (Modified wave)
Claps mostly bringing her right hand to her left.
Stands while held by her arms by someone with and without AFO's. Gets tired after about 2 minutes and falls down on the floor. She turns feet inward while standing. Sometimes I get scared thst her legs are going to break since she is so thin.
Reaches for toys with left and right arm. Right arm dominates.
She is still unable to roll over, sit or stand independently.
She is very social, makes eye contact, and says hello to any passerby.
She has difficulty using her left hand so much more than her right hand.
She refuses to eat anything solid including pureed food. Her nutrition consists of Pediasure and Gerber goodstart formula mixed with wheat cereal. She takes Prevacid twice a day and daily Curturelle Probiotics.
Therapies: we have six therapies per week. Physical, occupational, and feeding/speech. In any given month, Sophie is seen by a minimum of 3 Doctor specialists.

6 comments:

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  2. Like you, I have twins. Like Sophie, Daughter One aka Abby has CP. Unlike Sophie, Abby is not verbal, doesnt make eye contact, she has CVI- cortical visual impairment or claps.

    We also have daily therapy on the NHS. Currently we have a physio, OT, SALT and vision therapy. Abby sees a LOT of doctors and specialists as well.

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    1. Hi Thara, it is so nice to meet you. How old is Abby?

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    2. Hi Thara, it is so nice to meet you. How old is Abby?

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  3. Hi Lauren,
    Just wanted to say Hi and that I understand how you feel.
    I have twin girls who are 18 months old, 16 months adjusted, and we have just been told that Erin has mild CP. We found out 4 weeks ago so it is all very raw for us at the moment. So many unknowns. At the moment it seems to just be her legs that are impacted but we wont know the full impact till she gets to other milestones.
    Looking forward to reading your blog.
    Lisa xx

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  4. Hi Lisa,
    Thanks so much for visiting my blog. It is so nice to share experiences, tips, and advice with other moms that are going through the same thing as we are. Has Erin been diagnosed with diplegia? I wish the best. I look forward to sharing with you.

    Love,
    Lauren

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