June 2011
Sydney has continued to amaze her Doctors at Children’s Hospital of Philadelphia. She no longer needs the ventilator and was decannulated, having the trach removed permanently in March. Her right lung, which was 20% the size at birth is now about 75% the size and is functioning well. Her left lung is almost at 100% the size and function and she is no longer taking medication.
Sydney is age appropriate in her verbal and cognitive skills. This is something that we were told probably would not happen due to a stage brain bleed due to the ECMO, an artificial lung that Sydney needed for the first 19 days of life. She is very active and is working with a physical therapist to better her balance and increase her strength.
Sydney still gets all of her nutritional needs through her Gtube. We are working with a feeding specialist, something that we would not be able to do without the help from The Shannon Fund. Sydney will now take all kinds of food in her mouth and chew, she will just not swallow. We believe that it is out of fear, not because she is not able. Her favorite things to chew are pickles, ranch dressing, and BBQ sauce.
We have started the process of transitioning from Early Intervention to the Hampton public school. Sydney will be starting preschool in November. She is very excited about going to school, mom not so much!
Sydney is a very “normal” 2 ½ year old who is very eager to learn. Her favorite activities are “reading” and coloring. The Shannon Fund has given us the support needed to devote many hours and tools needed for Sydney to grow and thrive. Sydney would not have made the strides that she has if not for the Shannon Fund. Thank You from the depths of our hearts!
Decenber 2009
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
