I held her for the first time ever at 12 days old.
During her stay in the NICU, Dorothy was diagnosed with panhypopituitarism. This means that her pituitary gland was not formed properly and does not function the way everyone else's does. Due to this, she will be on at least two medications for life and will probably also require growth hormone to grow properly.
She also had a liver biopsy done, her gallbladder taken out, and a G-tube put in on November 10th during surgery.
Fortunately for us, with her meds, her Panhypopituitarism seems to be the least of our problems as of right now. A G-tube was also placed in her tummy and Dorothy is currently on 20 hour continuous feeds with a four hour break every day.
Due to her extensive three-month NICU stay, Dorothy left the hospital with plagiocephaly, otherwise known as flat head syndrome. She also has torticollis, a tightening of the neck muscles in a specific spot, and low muscle tone.
We have done everything that has been suggested to us by her physical therapist and pediatrician, but her flat head does not seem to be getting any better. We are now looking into referrals for Neurologist and a Cranial Facial Specialist.
Her Physical and Speech therapists have suggested several pieces of medical equipment not covered by insurance, such as a wedge for her bed that keeps her at a 45° angle when she is in bed resting, which may help improve her frequent vomiting. An ergo baby carrier has also been suggested to us, which her physical therapist believes may help her build her core strength which will help her overall health as well.
A DOC band it has been suggested in order to help improve her head shape. Currently her facial features are asymmetrical with the left side of her face pushed forward a bit due to her plagiocephaly on the back left side of her head.
A DOC band will slowly allow her head to grow and a more rounded shape and she will need to wear it for 23 hours out of the day with a one hour break.
Unfortunately, her health insurance does not cover the DOC band because they deem it to be an esthetic problem. The other equipment mentioned is also not covered by her health insurance.
Having a flat head can contribute to or worsen other existing medical issues.
Due to the high out-of-pocket cost of the DOC band, treatment, and other medical expenses and equipment, we are starting this Go Fund Me page in hopes to be able to afford it all.
You can follow Dottie's story on Instagram under the hashtag #DottieUpdate.
- Angela Kozak
- Don Gregory
- David Templin
- Kathy C.
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