Finally, an update!

Gavin turned 6 years old 2 days ago on Nov. 13, 2011 and it was a great day for him when a few close family and friends showed up at the house to help celebrate. It has been such a long journey since our last ordeal in Washington D.C. over the summer of 2011. I apologize for not posting frequent updates on Gavin’s blog as it indeed has been hectic trying to get back into the swing of things. To think, Gavin survived such a long stay in the PICU at Children’s National Medical Center in DC and the fact that he was close to needing a tracheostomy-wow, time and time again, our son has proved to be such a fighter and such a brave warrior. Gavin started 1st grade in August of this year @ Willow Grove Elementary and has a new nurse at school- Ms. Carol, who is fantastic. Gavin also has 2 new permanent nurses at home, Maria and Judith, who both work different 8 hour shifts to help Gavin, and they too have been so amazing! Truly, we have been so blessed with wonderful family, friends, and strangers that have come to our lives and have helped lift us up in so many ways. Gavin is doing well overall and has avoided frequent trips to the ER. He continues to be on bi-pap every night when he sleeps; this allows him to have more energy the following day. Gavin also continues to see his faith healer- “Auntie Apo,” every week and she has been such a blessing for him. We still cannot thank the Sheppard family of Canada enough, who donated the respiratory vest of their late son, Noah, to Gavin. Gavin uses his vest every morning and night and until recently, he has been using it on a massage table while he is on his tummy to incorporate postural drainage; the massage table allows gravity to effectively get all the gunk out that is being stimulated by the vest. His Godmother, Len, gave him the massage table and this has been so helpful for him. Lisa, mother of Nathan and Dillon, gave me the wonderful idea of doing the vest while Gavin is on his tummy- thank you Lisa! Like most kids with TSD, Gavin has good days and bad days, but for the most part, he continues to fight very hard. The ultimate goal is for Gavin to thrive so that he may have a chance for Gene Therapy, in which optimistically, phase I clinical trials will begin sometime in 2012! Please continue to pray for Gavin- HOPE is definitely around the corner. Praise God for choosing us to take care of Gavin. We continue to pray to God for continued strength in this trial and journey. Thank you so much for checking in. James 1:12

Category : Blog

2 Comments → “Finally, an update!”

  1. Mary
    4 months ago

    Jan and Bong, Thank you for sharing this update on Gavin. I’m happyo to hear that he is doing well and the support and love are still pouring into your family. Although I am not at home, I think about Gavin often and Joyce gives me updates. Happy Belated Birthday to Gavin! He is such a strong and inspirational boy! Love, Mary


  2. Jamie Ferrandi
    3 months ago

    Dear jan,
    I have been thinking of Gavin lately and just wanted to say hello…. I am so glad to get an update and learn he is doing well and fighting so hard. I hope you all have a wonderful holiday – you must be so excited for 2012!!!!

    Jamie (Olivia Ferrandis mom, we met at CCS a while ago)