49ers Embrace Road Challenge

Sep 17, 2012 at 10:51 o\clock

Down Syndrome Clinic

by: newnfl001   Keywords: Down, Syndrome, Clinic

Down Syndrome Clinic

Thanks so much. I felt like at the hospital, they talked like it was a really good thing and that we would see multiple people. W met the ENT and speech pathologist already with the clinic while Helen was hospitalized for severe Dysphagia. Everyone I talk to talks about hosw wonderful Dr. Escobar, who leads the clinic, is and how his "cup of tea" is feeding issues. I am anxious for the appointment, I am just afraid I am expecting too much. Thanks so much. I hope to hear other experiences as well.

I haven't read everyone elses comments, but we went to ours every four to six months for the first year. so I think we have been a total of 3 times. It took me 3 times to say. ENOUGH ALREADY! The lady who heads ours is the geneticist that River had in the NICU, and it was good originally to get a bunch of things checked at once. Like OT, PT, and ST gave their advices, then he had his eyes examined, then his mouth, ears, thyroid, cardio, But after we got rolling with all those people out side of the clinic I got really tired of going because we would get a report that made River sound like a case study. I understand it is a teaching hospital, and they use that language for clinical purposes, but I didn't need this "River is a 18 month old male child who exhibits low set ears, a sandle toe on his feet, up turned and slanted eyes, small genitalia, etc. etc. all commonly found in Ds". Which we didn't need to hear because he had genetic testing to confirm. Blah Blah Blah. He is a PERSON who is wanted and loved and we all look different. So it wasn't working for us past about 18 months. But like I said I think for new parents it is good to at least check it out.

We took Logan to the Ds Clinic in Houston when he was 4 months old and he is supposed to have a follow up every 6 months. His next appointment is in 2 weeks. Our experience at the clinic was good. He had two therapists do an evaluation and then the doctor did hers. I agree that it was pretty much no different than what our therapists and doctor are already doing. I do like that the doctor at the Ds clinic specializes in Ds and lets me know what we need to look for or remind our pedi about.

I have to say that the best part about our visit was when volunteer came to talk to us (as scared new parents) about her brother who has Down syndrome. Her brother is in his 60s and she adores him. We were able to hear a great testimony from a sibling of a child brought up in a time when services were not available like they are today. she knits blankets for babies with Ds and volunteers at the clinic to honor her brother. We received one of her blankets and lots of encouragment from her and the visit was very touching.