admin
01-23-2007, 05:00 AM
[left:f2dcea518f]http://www.cherubs-cdh.org/Album/new/barricklow-angela.jpg[/left:f2dcea518f]Reading the Cherubs newsletter was like traveling back through a time warp, and was a bit disturbing recalling all we had been through and tried to forget. It is great to know that if this awful thing happens now, there is support out there.
Our daughter Angela is now 12 years old, and is a beautiful survivor of CDH. She is exactly where she should be developmentally. She has earned trophy and 4 blue ribbons for her piano playing, plays sax in the school band, and takes ballet lessons. She does well academically, carrying a B average. When she was born she had almost no diaphragm, she was given an artificial on the day she was born. She needed a central line and gastrostomy tube for feedings. She had multiple surgeries, pneumonia, emphysema (from the ventilator), etc. during her first three month stay at the hospital. For the next two years she ate totally by G-tube, had frequent hospital stays, therapies, surgeries, etc.. Feeding therapy did not work, but at age 2 and a half she decided to eat on her own, and ate Kentucky Fried Chicken!! Several months later she was eating well enough to have her tube removed, and has eaten well since then. She is unable to burp, has many huge scars, and is quite small for her age, but those are the only physical problems she continues to deal with. She handles the burping problem eating small frequent meals, and avoids carbonated drinks. The scars do not her, in fact she sometimes jokes about them (she has a great sense of humor). Her size has worked out great for ballet, and piano does not require a person to be a certain size to play. We were surprised that she took up the sax with her lung problem. She can only play a few songs before getting winded, but continues to practice and perform. The biggest hurdle we now face is the emotional scars that her life has left on her. She has a family that loves her, including her dad (Jim), brother Jimmy (14 years old with Autism), her mom (Roxane), and many loving friends and relatives, who are doing all they can to support her whenever she needs it.
God bless you and the work you are doing! It is very important and much needed.
Written by Angel's mom, Roxane Barricklow (Indiana)
1996
Our daughter Angela is now 12 years old, and is a beautiful survivor of CDH. She is exactly where she should be developmentally. She has earned trophy and 4 blue ribbons for her piano playing, plays sax in the school band, and takes ballet lessons. She does well academically, carrying a B average. When she was born she had almost no diaphragm, she was given an artificial on the day she was born. She needed a central line and gastrostomy tube for feedings. She had multiple surgeries, pneumonia, emphysema (from the ventilator), etc. during her first three month stay at the hospital. For the next two years she ate totally by G-tube, had frequent hospital stays, therapies, surgeries, etc.. Feeding therapy did not work, but at age 2 and a half she decided to eat on her own, and ate Kentucky Fried Chicken!! Several months later she was eating well enough to have her tube removed, and has eaten well since then. She is unable to burp, has many huge scars, and is quite small for her age, but those are the only physical problems she continues to deal with. She handles the burping problem eating small frequent meals, and avoids carbonated drinks. The scars do not her, in fact she sometimes jokes about them (she has a great sense of humor). Her size has worked out great for ballet, and piano does not require a person to be a certain size to play. We were surprised that she took up the sax with her lung problem. She can only play a few songs before getting winded, but continues to practice and perform. The biggest hurdle we now face is the emotional scars that her life has left on her. She has a family that loves her, including her dad (Jim), brother Jimmy (14 years old with Autism), her mom (Roxane), and many loving friends and relatives, who are doing all they can to support her whenever she needs it.
God bless you and the work you are doing! It is very important and much needed.
Written by Angel's mom, Roxane Barricklow (Indiana)
1996