UN-inverted nipples?

July 15, 2009 - 19 month-old Bertrand with inverted nipples. Photo taken at the NIH.
Bertrand was born with inverted nipples. This was probably the first symptom we noticed because no one in either of our families has inverted nipples. Multiple geneticists have commented on this. Inverted nipples can be a symptom of several genetic disorders including some congenital disorders of glycosylation.


September 28, 2011 - 3 year-old Bertrand, about 1 month with normal nipples.

"Hey daddy, for the past month, Bertrand's nipples have been normal? They were inverted since birth. Is it just that he is skinnier? Or could the vitamins un-invert them?? It's just weird."

- Text message to my father, who is a doctor, on 9/28/11.

August 2011, we began vitamin therapy for Bertrand. He had been receiving at least 100% of the recommended daily allowance for all vitamins and minerals. But my belief was, that based on many of his symptoms, his body was having difficulty absorbing and/or processing these nutrients so he needed more. We drastically increased the dosage of certain vitamins. (For example, the RDA of B12 for a 4 year-old is 1.2 mcg but Bertrand receives 5000 mcg.) We immediately saw positive results.

And by a month later, Bertrand's nipples had officially un-inverted. At first we figured that he could possibly be cold, or maybe he'd been effectively anemic, or the normal condition could be temporary, even if odd. But now, I am just curious. His nipples have been normal for 7 months. What gives?

March 22, 2012 - 4 year-old Bertrand, 7 months with normal nipples.
If anyone can shed any light on this, please let me know! Especially given the recent developments with Bertrand's head circumference, if we may have hit on something I want to understand it. Thanks!

New Adaptive Gear Registry

Bertrand walked our dog Penny to the bus stop today. :) Victoria was jealous.

Normally, I am not a fan of gift registries, but I like the idea of this registry by Tadpole Adaptive. So far, Bertrand has been lucky to have family and insurance cover most of his equipment needs but many special needs kids are not. Adaptive equipment is EXPENSIVE. This registry enables friends and family to chip-in for a big piece of equipment in a child's registry. Waaaaay better than a silver or china pattern you'll never actually use. ;)

Dental Check-up

Bertrand's dentist information because I am too lazy to upload a real photo tonight. Sorry!
Today, Bertrand had a dental check-up for the first time in a year. Since his last check-up under anesthesia, his tooth grinding seems to have improved slightly, but his teeth are still slowly wearing away, and he still won't let me brush his teeth with a regular tooth brush. Instead, I use a wet wash cloth twice a day to brush his teeth. So, I was a bit nervous about what the dentist was going to say.

However, the check-up went great! According to the dentist, Bertrand's teeth look really good, and it's very likely that Bertrand's tooth grinding may resolve with age, after he gets his adult teeth. Bertrand didn't even get upset with the exam (thank you, Elmo). The next time he is under anesthesia, the dentist want to do a thorough cleaning, but other than that he just said, "keep up the good work!"

Boy, do I wish all doctors appointment went that smoothly!

Extended School Year

Bertrand qualified for extended school year (ESY) services again this year! This is such a huge relief! Last summer's ESY was key to keeping Bertrand (and me) from losing any skills. Now our fingers are crossed that he gets his beloved Ms. Connie again! :)

New Lightweight Wheelchair!

Bertrand's new lightweight wheelchair arrived today! It's the Xplore Mobility Dyno. We can't wait to test it out hiking and on the street. It was ordered by B's nana at the Abilities Expo in Atlanta early last month, and he loves it!

Cool, calm, and collected

Bertrand had a follow-up appointment for his CCTV EEG on March 9th. It has taken me a week to wrap my head around what transpired. The epileptologist, who I'd had such high hopes for, basically hadn't looked at the EEG, despite having 2 weeks to review it.

From what she glanced at before we walked in, Bertrand's EEG during sleep is significantly abnormal. He still has some myoclonus while awake too. She couldn't locate the episode (one our so-called looping seizures) that the nurses and doctor-on-call medicated him for. She was upset with the staff for giving Bertrand rescue medication because it prevented repeat seizures that night.

She actually asked me to act out the seizures, even though she'd been shown video of them at our first appointment with her, and then said, "I'll take your word on it." (WHAT?!) She proceeded to prescribe a high dose valium regimen--without her prescription pad, because she had lost it.

It's hard to put into words how deeply unimpressed I am with her professionalism, much less her competence.

We need an intervention.

Bertrand's medical team is not on the same page with us or even each other. Scheduling a meeting with his pediatrician to discuss our issues will be the first step.

Quality of life is our primary objective for Bertrand. I don't want to drug him for the sake of drugging him. There is a delicate balance necessary for seizure control. Too many seizures = no development. Too many drugs = no development. I got the impression that Bertrand was prescribed a treatment to get rid of me.

I want a doctor (to clarify: neurologist) who understands my son's case, his seizure types, his metabolic considerations, and his potential. I want a doctor who doesn't see my son as a waste of time. Better yet, I want a doctor who believes that my son has hope for a better life.

One that returns phone calls or emails would be nice too.

Trip to the Temple

My sister, Belinda came to visit this week. We had a great time! Her spring break coincided with Matthew's "spring break", so we were able to do a few fun things together as a family, such as finally going to see the Temple Square. It only took us 3 years of living in Salt Lake City to see it. :)