Muchas Gracias Radio Caracol Miami 1260 AM

Thank you Jose Antonio Ponseti

Thank you Jose Antonio Ponseti and everyone at Efectos Secundarios, Radio Caracol 1260 am.  Today we had the pleasure and privilege to participate on the air, live during his very special program.

www.caracol1260.com/playermini.aspx?id=1313864′

This has been a wonderful opportunity for us to share Lily’s story in Spanish!  Thank you for your kindness, compassion and open arms.  We had a great time!  Un beso para Jose Antonio, Eduardo y Keyla……

Efectos Secundarios is the Best!

Thank you Teachers and Therapists at Broward County Hospital Homebound Program

Maryse and Lily in her stander

Reading with Ms. Daisy is a treat for Lily

Camy and Lily

As the end of the 2009-2010 school year approaches, it’s time to say thank you to everyone at the Hospital Homebound Program of  Broward County who have made a difference in Lily’s life, education and progress this school year. 

Oksana and Lily

 You are exceptional professionals who are very special to Lily and our family.  We have looked forward to our time together and we hope to see you back next school year!

Lily loves to learn with Ms. Daisy

CMV Information

Hi Everybody,

For those of you who do not know, Lily’s Cerebral Palsy and Global Developmental Delay was caused by a virus of the developed world called  Cytomegalovirus, otherwise known as CMV.  Our family had never heard of this virus or the potential dangers of contracting it while I was pregnant until after Lily was born and diagnosed.  Recently we found several  links that we would like to have here and share with you.  These links contain important information and awareness of CMV for everyone, especially pregnant women.

http://www.stopcmv.org/awareness/

http://www.stopcmv.org/images/stopcmvnewflyeredit.pdf

http://www.americanpregnancy.org/pregnancycomplications/cytomegalovirusinfection.htm

Patricia Featured on Channel 4 Miami

http://cbs4.com/local/patricia.parron.make.2.1679635.html

Thank You Scott Alan Hair Studio and Channel 4

                                                                                                                                

I had a very special Mother’s Day thanks to everyone at Scott Alan Hair Studio at Aventura and Lisa Petrillo at Channel 4.  Thank you for your kindness, generosity and support.  Scott Alan and his staff made me feel so special from my head down to my toes!  I received a hair makeover, professional makeup, manicure, pedicure, lunch, flowers and gift basket!  Most of all, I had a day to myself to relax.  I was so pampered at times I had to contain my tears of joy and gratitude.  The segment will be aired on Channel 4 this week.  I will keep you all posted.

Some Days are Tough

On Saturday Lily had a seizure.  Usually I see it coming, this time it was unexpected.  She was walking on her gravity assisted environment, smiling and laughing.  All of a sudden she got very quiet and still near the end of her session.  Then she took a few more steps and smiled at me.  I took her down off the cords, placed her on the table to change her out of her harness and she began to jerk her head towards the left uncontrollably.  Her eye was also blinking out of control.  I called for Arturo and we began to mask her, get ice, clap our hands and pinch the skin on her legs.  We treated her for the next 15 minutes until she was stable again.  When she has a seizure it feels like time stands still until Lily makes eye contact with me, breaths deep enough to make a sound and then fall fast asleep in my arms.  She was wiped out when it was all over and had a nice rest for the next few hours.  She recovered well and when she woke up, she was smiling.  Lily, you inspire us with your love and expressions of happiness despite what you go through everyday just to breath well and function to your potential.  We love you Lily. We give thanks for your program at IAHP.  We are able to treat you at home thanks to the training we receive and no rushing to the hospital.

Gravity Assisted Environment

Lily loves her new program walking 3x daily in her gravity assisted environment. This is the best part of the day. Lily you are so beautiful walking!

Lily walks to Roy

Starlight Tea Party

Sasha Moon, Patricia Parron, Liliana Tenacio, Nicole Maristany

Thank you Starlight Florida for all that you do for families to overcome fear and isolation through your Great Escapes Program.  Lily and I had a wonderful time participating in the English Tea this year.  It was our privilege and honor to be a part of such a beautiful event.  Thank you for giving me the chance to wear another hat! For more information about Starlight Florida go to www.starlight.org

Back from Philly!!

Lily in the waiting room at IAHP

BUUUURRRRRRR!!!!!

We just came back from The Institutes´Intensive Treatment Program week in Philadelphia. We all go to the Institutes for the Achievement of Human Potential (www.iahp.org )with Lily every six/seven months to reevaluate her progress and design a new program with new goals for the next six/seven month period. Every time we go we need to cover costs such as

  • Fees
  • Air fare
  • Car rental
  • Specialists
  • Treatments
  • Supplements: vitamins, oils, etc
  • Materials
  • Child care

It is always a challenge getting ready for the next trip and it is fair to say that it has made possible for the last six years thanks to a lot of people who have supported us along the way and in many ways. We treasure them and hold them in the highest esteem. If you woud like to become a part of that support group, contact us (top of the menu) and we will be sure to welcome you in Lily´s life – Lily´s path to wellness.

Singer dedicates Lily a song

Javier Mendoza

This is one of those moments when you feel good, good about belonging to the world of someone special, someone who is making you better, someone who looks at you in the eye and expresses nothing but LOVE, LOVE, LOVE. A few weeks ago singer Javier Mendoza (www.javiermendoza.com) played at Miami Dade College and, thanks to a friend from Saint Louis – where he resides – we were fortunate enough to attend his performance. He sweetly dedicated Lily a song and that´s when we felt the chills!!!  Javier, thank you for being sensitive and supportive. We look forward to sharing more special moments with you :-)