Sydney had a trach put in at 4 months and is vent dependent. After leaving CHOP on June 16,2009 (224 days) She has done amazing. Her right lung is still very small but it does function at some level. Her left lung is almost full size and is very strong. Since September, Sydney has been weaning off of the vent. She is currently off the vent for 6 hours a day. She is still feeding through the GTube, we are trying food everyday but she is not very good with the textures. We will soon be going to Morristown Hospital for the feeding clinic weekly. The specialist is confident that when the trach comes out she will have no problems. We are keeping our fingers crossed!
Developmentally she is still a few months behind, but is working hard daily to learn how to crawl and walk. ( I am not in a big hurry. lol) The pulmonologist feels that if she continues the weaning at the speed we are going she should be off the vent the whole day by early Jan., and off the vent completely by her 2nd birthday.
Thank you again for everything that the fund has done for our family, I don’t know where we would be.
The Taborelli’s