Sydney turned 5 this past November. This was a very emotional birthday for mom since we were told she would not survive birth! Not only is Sydney surviving, she has done amazingly well. She is no longer taking any medications on a regular basis, the G-tube was removed last June (she eats constantly, weight gain is slow going though). She shows no sings of long term complications that are usually common with CDH like scoliosis, or chronic heart problems. She did stay a week at CHOP last February with pneumonia, and that still remains to be the only problem that we endure. When Sydney gets a cold, it always ends up in the right lung, causing fluid build up. The doctors are very aggressive with antibiotics and steroids, as well as breathing treatments, but unfortunately she stills seems to get pneumonia at least once a year. So she goes in "lock down" during flu and cold season. Visitor to our home are very limited, she does go to school, but if children are coughing or look sick, she is back home before the doors open. And we don't go to many public places during this wonderful season! If I could find a bubble suite, she would be in it 24/7 lol.
Sydney is a very well adjusted 5 year old. She is very aware of her birth defect and has recently been asking a lot of questions about it and what each scar on her torso is from. She is a happy little girl who enjoys reading and putting puzzles together and when she is at the Doctor's, loves playing with the equipment ( I think she is practicing for the future!). She is a sweet little girl with a very old soul.
As for the future? The Doctors keep a close eye on her, with follow up visits every four months at CHOP. A child of he severity would not have made it 7 years ago so they really don't know what to expect. If her lungs continue to grow and function the way they are, they are confident that she will have a very long and healthy life. If her body gets too big for her lung to sustain her respiratory needs, then a lung transplant maybe needed, but as of right now they see no need for it. She will probably never be a long distance runner, but will lead a "normal" life. She is very in-tuned to her body and is very good about resting when it is needed. She is definately our walking miracle!! We thank God daily for the amazing blessing that he has given us, including bring the amazing members of the Shannon Daley Memorial Fund into our lives!
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!
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.