So much to tell............

We went out to Denver April 4th-10th. Many many appt.'s!!! It all went better than expected!!

Endocrinology-Discussed puberty and Autonomic disorder.

Agreed Celia does have Autonomic issues but there really isn't a test for it or treatment either. Did a wrist xray to determine bone age, which helps determine stage of puberty, and did some blood work to assist in assessing the stage of puberty. Celia is in stage 3, so she is close to starting her periods and at that time we will start continuous birth control pills.

Pulmonologist-Discussed size of trach and lung health during and after spine surgery. I feel very comfortable with the pulmo and respitory department dealing with Celia's lungs during and after her surgery!!!!!!!

Agreed that Celia's trach was too small. Did chest xray to determine where her current trach was sitting in her airway. Changed out trach, from a 4.5 Ped to an Adult size 5!! Repeat chest xray to check length of new trach. She is doing well with the new trach with only a few issues, but nothing that we can't deal with.Neurosurgeon-Discussed whether Celia's filum was too tight or not. He is very adement that her filum is not too tight and that there are no concerns regarding her spinal cord in relation to her upcoming scoliosis surgery!

Gastroenterology-To discuss Celia's life long struggle with poo. We have always known that her rectum was not in the right place, however no one told us that she has Low Imerforate Anus. I won't go into detail, for those who are interested you can look it up! For now we are going to go back out to Denver in June for the "bowel managment clinic" where I will learn ALL about enema's. We will stick to enema's as long as they work, if they are not effective enough or lose effectivness over time then we will move on to surgery.

Child Development Unit-To discuss Celia's behavior. Their recommendations are,,Psychiatric services,,Behavioral Therapy,, and Adaptive Communication Clinic. None of these things are available in our area..............

Sleep Study and EEG-Celia did so wonderfully! She tolerated all the probes,,she tolerated all the tape,,she actually slept!!!! Just got the report this last week and it was "relatively" normal with only a couple of apneas and hyponea. The EEG was also "relatively" normal. I don't have that report in hand yet to report any more than that.

Orthopedics-Celia's curve has gone from 45 degrees to low 70's!!!!!!! So Scoliosis surgery is scheduled for July 12th. As of yet I have no idea how long we will be out there for the surgery as it all depends on how well Celia does.

I am hoping to coordinate the "Bowel Managment Clinic" with the "High Risk Spine Suregery After Care" meeting so we will only have the trip in June and then July for her surgery!!