Momma Got Mad

I have spent the past few months researching how to create the best life for Aero. I have been diving rather deeply into Down syndrome therapies, science, advocacy, etc. I have just scratched the surface in how I can best serve Aero. I am amazed, awed and inspired by several moms who blog to share their discoveries in teaching methods, neuoroscience, developmental practices, supplement protocols and also, provide a lot of support to moms like me, just starting down this path. Thank the universe for their passion and dedication. Here is a link to just one of the sites if you are interested in furthering your knowledge www.einstein-syndrome.com.

Thursday was Aero's 9 month check up with the pediatrician. She had only met him twice before, in June for an  intial meeting and July, his 6 month check up. The first visit in June, Aero was just out of the hospital and I was dazed and distracted with all that involved his care at home. On the 6 month check up, I had a few questions about vaccines, leukemia (kids with D.S. have a higher incidence of leukemia) and seeking a referral to see a feeding specialist and ENT (ear, nose & throat) at Children's. She quickly answered my questions and wrote the referrals. I don't even remember her touching him. Though, that can't be right? How can you do a check up without an exam?

On this visit, I was prepared. I had done so much research that had created so many questions. I even made a flow chart in excel to prepare myself so my chain of thought would stay fluid and I would not forget anything. I also had a copy of the Pediatric Guidelines for Care of Children with Down Syndrome. According to this resource, quite a few tests that should have been done had not even been spoken of or suggested. This is what I find to be my greatest role for Aero, advocacy. Seriously folks, you think your pediatrician or other caregivers in the medical field would be up on this info but they are not. Perhaps their caseloads are too large, or they don't have other kids with Down syndrome as patients or.....whatever. It doesn't matter. And it does no good to bitch and moan. What I can control is my own knowledge. Parent, PhD as one of the  moms suggested.

Aero is naked, except for a diaper. The nurse just weighed and measured him (19 lbs 7 oz, 28 inches). We are waiting for the pediatrician I had a really hard time finding a pediatrician. I chose this one because she is also a constitutional homeopath which means that she gives credence to alopathic healing as well as complementary. A knock at the door and a young man enters. He identifies himself as Dr. David ??? (can't remember). He says that the doctor will be in soon he is just here to do preliminary.

Preliminary? Great. Aero has a huge medical history and I really don't want to take the time with my naked baby to bring Dr. David up to speed. I try to convey this as politely as possible and also mention that I have a ton of questions for the doctor regarding the Pediatric Guidelines for the Care of Down Syndrome. She arrives 5 minutes later and is pissed. She launches in to me, extremely defensive, barking that she had done this and done that and she does not like this and that and won't let me finish a sentence and basically tries to belittle and humiliate me. I tell her that she is not letting me finish my thought or a sentence and would she please stop talking. "I am a single parent of a child with Down syndrome and special medical needs. I want my child to realize his potential and live the best quality life that is possible (I think this is when I started crying). I have done an intensive amount of research on how I can affect that and I need your partnership. Is this something you are willing to give by working as a team in his care?"

She listened. She made the referrals I needed for tests; CBC (compete blood count) to check many markers for nutrition. Kids with T21 generally have a depletion of zinc and selenium which creates a whole host of problems, under functioning thyroids, celiac, sleep apnia, etc...the list goes on. I also believe it would be highly beneficial for Aero to be involved in a neuro development program. They would be more the drivers of his care rather than the pediatrician.

And, guess what. She did not examine him, again.