Sunday, September 23, 2012

Reesa Meets New Friends in Pittsburgh

We just got home from our second trip to Pittsburgh to see Reesa's Krabbe specialist, Dr. Maria Escolar.  This was an exciting trip because we met other families dealing with Krabbe including a baby from Maryland who is recovering from transplant surgery as well as a baby all the way from Argentina.  ReesaDrEandFriends We also had the pleasure of meeting The Aldrian Family from San Diego.  They have twin boys, Tyler and Trevor, who turn 4 years old in November.  Trevor has Krabbe and Tyler is a carrier but unaffected by the disease.  Seeing the two boys was an emotional experience as Tyler is as healthy as can be while his twin battles this disease.  Trevor is a trooper though and an inspiration to families like ours.  He is the oldest child we know of that suffers from the early-infantile form of the disease which is what Reesa has.  The Aldrian's have formed a foundation to help other Krabbe families called Peace, Love & Trevor.  Please visit their website: www.peaceloveandtrevor.com.

ReesaTheAldrians

As for the doctor's appointment things went fairly well.  As expected, Reesa's disease is progressing but we're doing a good job of keeping her comfortable and as happy as we can.  Reesa had an MRI(her third) because the doctor is a bit worried she may have pressure on her brain caused by fluid build-up.  We should know more in a few days.  Other than that our main focus is managing her meds to keep the spasticity in her arms, legs and hips to a minimum.  The spasms not only cause pain, they also contort Reesa's body and can cause asymmetry and scoliosis.

Thank you all for your continued love and support!

ReesaSnoozing ReesaDrEPhysicaltherapy ReesaPT

4 comments:

  1. That is so great that you got to come together with some other families who share your experience .Comforting I am sure. Reesa is such a doll.Again thank you so much for keeping us informed as you all are constantly in my prayers .Much love to all of you xoxox

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  2. Simply, may God's blessings be with you all, and all who are affected in any way by this disease. My thoughts and prayers are with you every single day! Love ya! XOXOXOXO!!!!!!

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  3. Thank You for all your posts and photos. May God bless all of you. please give Reesa a big hug and kiss for me. My thoughts are always with you,

    Phyllis Kownacki
    Lawrenceville,NJ

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  4. Popi loves his Angel more than anything ever

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