March 31, 2012

Bertrand's New Pool

Besides the therapist, a major component of aqua-therapy is the pool. Close to our house is the Salt Lake City Sports Complex. It was the official training venue for the 2002 Winter Olympics. The facility has two state of the art Olympic ice sheets, two Olympic sized pools and full fitness center. In their words it is "a world class experience as a magnificent cross-training center".

Sounds like it just might be good enough for Bertrand, right? ;)

Even more amazing than the venue is the fee because Salt Lake County has a Plus One Pass system.* This is a pass for Salt Lake County residents with a permanent disability providing entrance of one assistant for free, and their family rate is also discounted.

So, our family got an annual pass (which allows unlimited use of all Salt Lake County Fitness & Recreation Centers including land and water aerobics classes and access to the pools) for $215! And Bertrand can bring his therapist for free--all for less than $18 per month. My mind is just blown.

Maybe I will actually start working out so I can lift my 6 foot-tall boy some day!

*There is also a Salt Lake County Paralympic Sport Club and the Miracle League Baseball League! Oh, little Buddy doesn't even know what he's in for! Mama wants to see him in uniform. :)

March 30, 2012


It's hard to believe that sweet baby almost gave her brother a black eye! She was trying to feed him his bottle.

It feels like I am juggling--more so than usual. Bertrand is doing well and we want to take advantage of his receptiveness. Of course, this isn't straightforward. Here are some of the items on my mind:
  • Valium Protocol - The epileptologist finally called me back! She had not forgotten to call in Bertrand's prescription. She had just forgotten to call to tell me she had changed her mind. She wants Bertrand to commence the valium protocol inpatient. I am scrambling to schedule that next week during his spring break.
  • Aqua-therapy - Miss A, Bertrand's home physical therapist, is studying aqua-therapy. And Bertrand starts it with her today! (We've tried for years to get Bertrand in with a local aqua-therapist without luck.) I am scrambling to get a +1 membership to our local pool.
  • Power Wheelchair Training - Also with Miss A, Bertrand has been making lots of progress with the practice power wheelchair at Shriners. We are going to touch base with the therapist in charge of chair evals at Shriners on Monday. Scrambling to get last minute practice in.
  • TAOS - On Monday morning Bertrand will be fitted with his TAOS! Fingers crossed. I've watched the parent information video about 10 times now. I think I could put Bertrand in it in my sleep.
  • Medical Care Meeting - In about 2 weeks, I will be meeting with Bertrand's pediatrician to talk about the quality and management of his medical care. I'll probably share my list of concerns before then.
  • Saying Goodbye - Yesterday, I received the sad and unexpected message that Bertrand's fabulous mobility therapist was being transferred. This seems thoughtless and potentially damaging on the part of the Salt Lake School District. Bertrand loves his Miss Liz. It takes a looong time to earn Bertrand's love. There is almost no chance that with only 2 months left in the school year he will adapt to another person. Or that another person will learn how to best communicate and work with him. Losing Miss Liz could arrest not only Bertrand's progress but that of the other kids in his class. I hope that the district sees it's folly and let's us keep Miss Liz!
So there you have it. Lots of scrambling and some worrying (hopefully unnecessarily) on my part. Wish us luck! And you better believe there will be some aqua-therapy pictures here tomorrow. :)

March 29, 2012

Ben & Jerry's Free Cone Day

Next Tuesday, April 3rd is Ben & Jerry's FREE Cone Day. This year, the Ben & Jerry's at Gateway has chosen our dear friends at the Carmen B. Pingree Center for Children with Autism as their charity! So go, get some free ice cream, and leave a generous tip. :) It will go to benefit the 170 kids, like Bertrand, who are helped by the school every year. Oh, and the tips (up to $1000) will be matched by Cyprus Credit Union!

March 28, 2012

A Trip to the Zoo

Today was supposed to be Bertrand's TAOS fitting, but it wasn't delivered in time. They called to let us know just minutes before we left the house for the appointment.

Since we were all dressed up, Victoria provided some inspiration. She was running around pointing out each of our chickens ("Eeee!") and dogs ("Gag!"). Why not go to the zoo?!

Just after opening is the best time to go to the zoo. Hardly anyone is there and it is very quiet.

Bertrand doesn't get over stimulated. And, he can hear the animal noises well. He LOVES their sounds!

Since the displays weren't crowded, Victoria could walk around (pointing out ALL the animals) and Bertrand could pull right up in his wheelchair without blocking anyone. And we could take our time at each of his favorite animals because no one was waiting on us to move.

We were there right at feeding time. So all the animals were very active and visible in their anticipation of food. (Both kids were super amused that monkeys eat carrots!)

We rode the completely empty carousel. Bertrand sat with his Nana in a peacock bench. Victoria started out on a monkey, which she loved--while it wasn't moving. Once it came "alive", she clung to her Mama and insisted on pointing at all the carousel animals. She bravely petted the giant giraffe on our way off.

We heard the tigers roar and saw them up close. It was really cool--even for Mama and Nana. Bertrand's face lit up. :)

Victoria was flipping out with excitement for the tigers. "Taa! Taa!"
Bertrand on the other hand preferred the monkey house.

It was hard to take her picture because she kept running back to the huge, roaring, hungry tigers. Self-preservation isn't her strong suit.

"These aren't real tigers, Mama. You're silly. I want the real ones."

Hungry wolves love nothing more than a tiny baby pointing and screaming "GAG!" at them.

At this point the kids were both asleep and it was time to get home. Bertrand needed to get ready for school! It was an exciting morning. :)

March 27, 2012

"Surgery for Epilepsy Gains Urgency in Trial"

The New York Times
March 12, 2012
Surgery for epilepsy is usually seen as a last resort for patients when medications do not work, and it is often delayed for many years after the failure of drug treatment. Now a randomized, controlled trial suggests that surgery as soon as possible after the failure of two antiepileptic drugs is a significantly better approach than continued medical care...
Read more HERE.

March 26, 2012

Purple Day 2012

Today is Purple Day! Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2012, people in dozens of countries on all continents INCLUDING Antarctica will be participating in Purple Day!

Purple pride. ;)

March 23, 2012

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!

March 22, 2012

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. ;)

March 21, 2012

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!

March 20, 2012

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! :)

March 19, 2012

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!

March 18, 2012

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.

March 16, 2012

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. :)

March 11, 2012

Goodbye, Microcephaly?

Yes, that is Bertrand taking his bottle, one-handed like a boss.

I needed some good news this weekend, and it came from the best possible source: Bertrand. His head appears to have passed the 15th percentile!

A little over 2 years ago, Bertrand was diagnosed with microcephaly, which literally means small head. His head was measuring in the 2nd percentile.
Since head growth slows down as kids get older, most of Bertrand's doctors had stopped measuring his head circumference. At his past several neurology appointments, I've had to request that they take the measurement.

As a result, since this past summer, I've been tracking his head circumference. While his doctors haven't commented on the trend, I think it's a significant one. I will take any excuse to celebrate my boy! :)

March 8, 2012

Building Skills for Life

Another photo of Bertrand holding his own bottle. It never gets old!
And, yes, he is man enough to borrow his sister's bedsheets when his are in the wash. ;)

This is an entry for our bloggy friend, Barbara's, blog carnival based on the American Occupational Therapy Association's (AOTA) 2012 theme, Building Skills for Life.

The first 3 years of Bertrand's life, we were so desperate to do everything and anything to help our son that we didn't take time to prioritize our activities with him. The birth of our daughter, Victoria, harkened a paradigm shift. We could no longer waste time doing therapy for therapy's sake. Therapy had to provide a measurable benefit for Bertrand.

We shifted our focus to building skills for life. We had to evaluate, cut back, and in very few cases add therapy. To everyone's astonishment, Bertrand is flourishing! It's obvious in hindsight, but we learned that doing a few things intensively and consistently yields better results than doing many things sporadically.

The October and December intensive therapy sessions at Now I Can, while valuable in and of themselves, forced us to consider what and how we provided for Bertrand at home. (He has me wrapped around his little finger, so Mrs-Tough-Mommy-Therapist, I am not.) We hired two WONDERFUL therapeutic aides for Bertrand--Miss A and Miss V--to implement the significant at-home exercise programs which was prescribed. Together we established a few goals.

Goal number one: sitting safely. Bertrand could sit upright when placed on the floor, but because of his movement disorder, he would fall over and hurt himself. Now, he keeps one arm down, braced on the floor, or reaches down to brace himself. He rarely falls! This was a continuation of his work with Now I Can.

Goal number two: self-feeding. Bertrand was still being fed soft foods and a baby bottle for most meals. So for every meal, even though it would be faster or easier to do it for him, we helped Bertrand hold his own bottle. And now? He can hold his own bottle for most of the meal!

In this same vein, he is made to hold his spoon to feed himself his applesauce snack in the afternoons and we've varied the textures in his dinner--expanding his palate. None of this goes smoothly. It is messy. At the start, he is unhappy, BUT he does it. And he is getting better! Every. Single. Day. You can see his growing pride and initiative reflected in his beautiful smiles!

Other broad, lofty goals include: mobility (walking, power wheelchair), potty training, and communication (speaking, reading). WHY NOT? Hopefully, we've got some time with him. Nothing ventured, nothing gained. Yes, these are skills for Bertrand's life, but they are also skills for our family life. The more interactive and happier Bertrand becomes, the happier we ALL are. :)

March 5, 2012

Power Wheelchair Evaluation

Bertrand's power wheelchair evaluation today was interesting. He used a chair with proximity sensors on the tray. It was like a giant switch toy. He did well for being sick, hungry, and sleepy. However, before the Physical Therapist (who has never worked with Bertrand before) can give his recommendation in favor of a power wheelchair, Bertrand will need a lot of practice: a suggested minimum of 3 times per week.

We'll go back up to Shriners on Thursday to work with the chair. And, I hope that Bertrand may be able to work with the mobility specialist at his school. Going up to Shriners with Victoria is very difficult--she kept trying to play with other children doing therapy and/or distracting me. However, Bertrand's beautiful smiles whenever he zoomed (like his new hero Lighting McQueen) cemented my resolve to give him this chance.

March 4, 2012

First Time Skiing & Sledding

We went to Park City with our friend Dave. He took these beautiful photos of Bertrand taking Victoria on her 1st sled ride and Victoria skiing. For giggles, we put Victoria on skis, but the joke was on us. She did GREAT! At only 10 months-old she's a better skier than her mama! :)

FYI - The cardboard box in the rear of the sled is Bertrand. :) The box protects his eyes from the wind and sun, as well as helps to keep him upright.