Sunday, February 24, 2013

Team Reesa!


We would like to dedicate this blog entry to all of the wonderful people that have become part of our lives and who make a tremendous difference in Reesa's life.  When Reesa was first diagnosed, Hospice of the Valley came over to talk with our family.  The one thing they encouraged was that if our jobs were supportive we should keep working to keep normalcy in our lives.  If we were going to keep working we knew that we would need help during the day and at night.  Grammy Flo has been there for us since Day One.  She watches Reesa 3 days a week and we're so lucky to have her.  In addition to Grammy we have also welcomed Nurse Angel and Nurse Stephanie into our home.  When we first met Angel and Stephanie we knew they were a perfect fit for Reesa and our family.  Angel has been a nurse for many years and has a lot of experience with children and although Stephanie didn't have as much experience with children, Reesa's story touched her because a family member has a similar disease and she was eager to work with Reesa.

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When looking for a nurse we wanted someone that would take amazing care of Reesa and would love and care for her just like a family member. Angel was a perfect match! She watches Reesa 2-3 days per week. She is so patient with Reesa and loves dressing her up like a little doll.  Angel not only takes wonderful care of Reesa but she is very proactive with her which is important because any small change in Reesa's behavior can be a sign that something is going on that needs immediate attention. Reesa loves when Angel sings to her and of course loves when they snuggle.  Our night nurse, Stephanie, is also wonderful with Reesa and she allows us to get a full night sleep.  Stephanie stays up and cares for Reesa by administering her meds throughout the night, suctions her as needed and periodically repositions her so she doesn't wake up with cramps.  When Reesa decides she doesn't want to sleep she loves to snuggle with Stephanie late at night in her rocking chair.  Stephanie recently started working with Reesa every other Friday (during the day) which is working out great.  Reesa is always busy with visitors throughout the day. Every Monday and Thursday she has physical therapy with Cristina.  The stretching and positioning done during Physical therapy help keep Reesa healthy and improve her quality of life. Reesa also works with Regina, a developmentalist, on Tuesdays.  Regina stretches Reesa and also provides visual and auditory stimulation using the iPad with music and coloring apps.

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Reesa's pediatrician is Dr. Barcellona.  Dr. B is very compassionate and accessible at all hours.  He also works closely with Dr. Maria Escolar at Children's Hospital of Pittsburgh.  Dr. Escolar is the Director of the Program for the Study of Neurodevelopment in Rare Disorders.  She and her team are experts with regards to Krabbe disease and direct us on all of Reesa's needs, including medications, equipment, therapies as well as monitoring the progression of the disease.  Dr. E's nurse practitioner, Tara West, is there to support us literally any hour of the day.  She has helped us get through many situations ad we can't wait to meet her in-person in April when we go for Reesa's next visit!

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  1. Thank God for putting all the right people in your lives to help make everything easier . Reesa deserves nothing but the best.Praying for you all the time and love your blogs .

  2. I am so happy that God's blessings are with you all! Reesa is truly blessed in the parents she has and everyone else to help her and her parents. You all are always in my thoughts and prayers! And I too love your blogs! May God's blessing continue to be with you all! XO

  3. I am glad to see you have a such an amazing support system/team!! Each member of your team is so special The best and most amazing cheerleaders for miss reesa are her mommy and daddy. GO TEAM!!! you are amazing. I think of you so often. Thank you for the update. All my love...

  4. It is amazing how an angel like Reesa can touch so many lives, and she has. She has touched my heart and soul. It is so good that there are so many loving people helping you with Reesa. God Bless all of you.

    Phyllis Kownacki
    Lawrenceville, NJ

  5. Ha!
    The picture with Dr. Barcellona cracks me up! It looks like someone just announced to Reesa that it was time for shots. That just goes to matter the situation, most children don't want to go to the doctor. Reesa is well loved by her team. I can tell you from personal conversations with the each team member that she definately has a hold on our heart strings (even on the days spent crying!).

    hugs and kisses to Reesa the fashionista
    nurse angel