August 2, 2010

From the Professional's Point of View

We have had a gazillion therapists, specialists and doctors work with A over the past 4 years. In addition to the many neonatologists, surgeons, nurses and therapists that worked with A during the 12 weeks she was in the NICU, we have had:

Neurology (discharged)
Renal (discharged)
Pulmonology (discharged)
Plastic Surgery
General Surgery
Nutrition (soon to be discharged)
Developmental Assessment (discharged)
Early Intervention Team (aged out; this included a teacher and visits from a physical therapist, speech therapist, occupational therapist, vision therapist, deaf/hard-of-hearing therapist, social worker and nurse)
Speech Therapy (both through our insurance and through the school district)
Occupational Therapy (discharged)
Physical Therapy (both through our insurance and through the school district)
Adapted Physical Education
Deaf/Hard-of-Hearing Therapy (to start this fall)
Regular Pediatrician

Whew! That's a lot of specialists! This doesn't even include the nurses that Children's Hospital and the county would send to our home soon after the NICU discharge, nor our fabulous nurses we had to help take care of her.

I am so consumed with my life as mother to two children, including one with special medical needs, that I rarely think about the professionals in our life. I rarely think about how THEY feel treating my daughter. I wrote about it a little when her physical therapist expressed how pleased she was at A's motivation. I have also heard from other therapists that their work is most rewarding when they see the kids make progress: A progressing from rolling to crawling to walking was amazing for our physical therapists; A progressing from signing to saying a few words to speaking in full sentences puts a smile on our speech therapists' faces.

Today I got a glimpse into how it is for her doctors to treat her. We had a follow-up appointment with the surgeon who removed her g-tube (the incision/scar looks great, by the way). She was in the room when the ENT removed her trach (again, the trach removal was a total surprise for us). So I asked her....what did the ENT say when he was looking at the trach? She said that he and his team looked, and just said "let's take it out". But she also said that he (the ENT) was very excited. In fact, they had a little fight about who was going to talk to J and I first in the consultation room post-op. He wanted to go first to tell us that he had taken the trach out; she wanted to go first "because otherwise it would steal my thunder about taking the feeding tube out". Both were excited to tell us! I really think that taking A's tubes out made their day!

The surgeon also told me that it was great for her to take the feeding tube out. She sees so many babies with g-tubes, and it is nice for her to be able to tell parents that she just removed one from a 4 year old; it gives the parents hope that their baby's tubes will someday come out, too. I know the feeling of seeing someone who recently got their feeding or breathing tubes removed, and the sense of hope it instills.

It made me realize just how much these doctors and therapists want the kids to become healthy. The therapists WANT their patients to talk, walk, eat, etc. The doctors WANT their patients to have their feeding and breathing tubes removed, to pass audiology tests, to not need as severe corrective lenses, or whatever the case may be. I now realize that it makes their day to have a success story.

I am so glad that A is, and will continue to become, that success story. I hope that she is an inspiration to others going through similar issues.


  1. You got me pegged!


  2. What an inspiration she is for sure!!
    It's so nice that you have so many people looking out for, and cheering A on!
    Loved this post :)


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