A BRIEF HISTORY ON NOLAN

Nolan will be 3 years old on June 12, 2004. He was born at 27 weeks with a birth weight of 1 pound, 1 ounce (490 grams) while on vacation in Texas. His immediate hospital was Cook's Children's Hospital for a two month stay, Baylor University Hospital for an additional two months, then flown by hospital jet to PSL Medical Center in Denver. By the time we left PSL Nolan had been in the ICU for 1 year and 5 days. Nolan had private insurance which he maxed out by the time he was 4 months old at 1 million dollars, and began the use of Medicaid. Nolan has had 13 surgeries including a tracheostomy, G-button, nisen, PDA ligation (heart surgery), intestinal surgery, several eye surgeries, GI pyloroplasty surgery, nisen revision, hiatal hernia and trach site granuloma removal.

NOLAN'S PROJECTED OUTLOOK FOR FALL OF 2004

As of May 2004 we are taking steps toward removal of Nolan's trach by mid-summer. By fall it is expected Nolan will continue to be on oxygen, using nasal canula to replace the trach. By Doctors orders, Nolan will not be allowed to go to Preschool in the fall due to the probability of his partially open trach site which could easily become infected or an invitation for cold and flu. Nolan will continue to require oxygen and a humidification system. Nolan will most likely continue to have bronchopulmonary dysplasia with chronic lung disease and low immune system. Nolan has blindness in right eye and legally blind in the left eye, he wears glasses and receives vision therapy. Nolan continues to show feeding intolerance with 95-100% of caloric intake through g-button bolus feeds with reflux episodes, aspiration precautions and inconsistent weight gain/growth. Nolan has feeding specialist working to help him overcome his oral aversion. Nolan will eat 2-3 ounces of baby food twice daily. Nolan has in- home OT 3 times per week to help him overcome his severe sensory integration issues. Nolan has in-home PT 3 times per week, he wears SMAFO's to support his ankles while he's learning to walk. We are hopeful Nolan will be taking some unassisted steps by fall, but are aware of his safety issues regarding mobility, vision impairments and lack of protective reactions. Nolan also has in-home speech therapy since he is non-verbal. Therapists are working with him at this time using assistive technology and having some success. Nolan also receives in-home music therapy which we use in all areas of his day and therapies since he is so incredibly fond of music. A concern my husband and I have is the availability of doctors who specialize in many of Nolan's issues and accept a Medicaid client. Because Nolan was born a micro-preemie and has had such complicated issues we have been blessed to have Nolan be the patient of three directors of NICU's and world renowned Doctors and specialists. This incredible care has made such a difference in Nolan's many successes. Ryan and I have similar concerns in regards to his much needed therapies and availability of in-home therapists to continue working with Nolan.

Jody Farris