Today Jordan was evaluated at the Multidisciplinary Development Pediatric Clinic at the Gerber Center. She has been in the Feeding Clinic for the past year, but the determination was made that her challenges went beyond feeding and she was moved to this clinic after her March feeding appt. She will be evaluated every 6 months by a team of specialists who together evaluate her progress and determine her treatment plan. The appointment runs about 4 hours and Jordan did great!! She started to break down during the last hour but she made it through!
She weighed in at 20 lbs 14 oz and was 30 3/8 in long. She is about the weight of an average 12 month old and length of an average 14 month old. She is in the 25th percentile proportionately (which is good!) Everyone was pleased with her weight gain and they will continue to keep her on the same feeding program.
We started the morning by seeing the psychologist, Steve Pastyrnak. He did a developmental assessment on Jordan and found that she was cognitively at about 19 months, receptive communication was at about 19 months and expressive communication was at about 17 months. Fine motor was at about 15 months and gross motor was at about 12 months. (I didn't write these down at the time so I am pretty sure I got them right, but I will update later when I get the report if I am wrong on any of them.) I was very surprised at these results, especially the expressive communication. We have felt that Jordan's not being able to talk showed a more significant delay but he found that although she may not be using words for everything, she is clearly communicating her wants and needs. He did, however, agree that her strongest need is in speech/communication therapy and recommended we pursue a focus in this area. Her gross motor, while significantly delayed, has shown significant improvement and will continue to improve as long as we continue to work with her. We discussed discipline and some appropriate techniques to use with Jordan.
Next we saw the social worker, Lori. We went over various services and made sure that we were utilizing all resources that are available to us.
Next we saw the speech pathologist, Jane, and the dietitian. They felt that Jordan was doing a good job at expressing herself with various vowel sounds and tones, but was still struggling with progressing through new consonant sounds. They recommended Jordan receive oral motor (Beckman) therapy with speech and feeding goals. They also want us to repeat a video fluroscopic swallow study to see if we are able to pursue oral feeding. The again reinforced that Jordan's Early On therapy be speech-focused.
Next we saw the physical therapist, Lisa, and occupational therapist. They were impressed at some of the things Jordan was doing and want us to work on her carrying an object (like a ball) with 2 hands while walking, squat for a toy rather than getting down on knees, and to get up from the middle of the floor. They also want us to work on fine motor by using sidewalk chalk, color forms or window clings, and hiding objects in playdoh for her to use her fingers to dig out. They encouraged me to keep her in a rear-facing car seat until she reaches the maximum weight for rear-facing (usually about 30 lbs).
Next a nurse came in and performed a hearing evaluation. Jordan passed for both ears.
Finally we saw the nurse practitioner, Jeanie Koops and Dr. Burdo-Hartman. Jeanie did a thorough exam and felt that Jordan definitely showed significant improvements from her evaluation 1 year ago. Then Dr. Burdo-Hartman came in and checked Jordan over. They want her to be evaluated by an ophthalmologist to be evaluated for vision problems and genetic syndrome. They also want her to keep her appointment with Dr. Toriello, the geneticist to pursue any other possible syndromes.
Dr. Burdo-Hartman only did a quick 5 minute evaluation of Jordan which was kind of frustrating for me. I know that all of my concerns were addressed during the entire day of evaluations, but I had hoped for more time with her to discuss her opinion of those same topics.
The diagnoses that were listed on her discharge instructions are 1-Cerebral Palsy (gross motor function classification 1), 2-Dysphagia with Aspiration (Nissen & G-tube), 3- Dysmorphic features, and 4-Global Developmental Delay. We will be back on November 9th for another evaluation. Later in the day, all of the people that evaluated her will come together and review her information and decide if together they have any different diagnosis or treatment plan. In a few weeks, I will receive the written evaluation summary and will update with any information I have missed.
After 4 1/2 hours, Jordan and I were more than ready to go home. She fell asleep on the way home and I was able to have some lunch and then write this update. I am exhausted, yet feel excited about Jordan's future!
