VCFS and Angelina

As you know we are attending the VCFS conference in July to learn more about Angelina's syndrome. Her syndrome is known as Velo-Cardio-Facial Syndrome or DiGeorge Syndrome. It is a very complicated syndrome in that it can involve so many problems with different body systems, up to 180 reported anomalies!

We are already aware of some of Angelina's problems:
Cardiac abnormalities: she's had 2 of 3 heart surgeries
Suppressed immune function: she's always on antibiotics to help her prevent infection
Hypocalcemia: She has to take calcium supplements to prevent problems such as seizures (she had them when she was 2 days old)
Feeding Problems: Angelina is mostly fed through a feeding tube through her tummy, although she is eating more and more by mouth!
Delay in achieving developmental milestones: currently she gets weekly physical therapy and occupational therapy to help with things such as crawling, standing, walking and eating. A special teacher comes to our home as well to help her reach her milestones.
Sprengel's Anomaly: her left scapula wings out slightly, causing her some problems with strength and stability on that side.
Abundant Scalp Hair: can you believe that? We don't consider her beautiful hair a problem!

We recently saw a clinical geneticist, Dr. R. Clark. Because she is a specialist in genetic disorders, she has set us up with more consultations and tests to rule out other problems she may have.
So our appointments include: an Audiologist, Orthopedics, have a Kidney Ultrasound, and see a Craniofacial Surgeon.

The first 3 we have already seen. Her kidney ultrasound came back normal. Orthopedics thought her Sprengel's anomaly was minor and won't require surgery.
Now her audiology appointment was a bit upsetting to say the least. Apparently Angelina has small ear canals. They had problems running hearing tests, for a few reasons, one being they thought she might have a cerumen impaction. (too much wax in ear--YES, I clean her ears!) At this point the tests they were able to perform showed mild to moderate hearing loss. BUT, this is not definite until we see her pediatrician who will clean her ears out, and then she will have the hearing test repeated. So, I'm hoping and praying that her hearing will be fine. Her repeat test is scheduled for July 15th, I'll keep you posted!
Help us pray that hearing loss won't be added to her list!