The State of Bertrand's Care

Today, Matthew and I met with Bertrand's wonderful pediatrician to discuss the state of his care. She was 100% on the same page as us, and is now organizing a meeting with all of Bertrand's providers through the palliative care team.

While the neurology department issues were discussed at length (and are to be continued...) we discussed all aspects of Bertrand's care including: an impending trip to Duke University for study results, functional electrical stimulation (FES), and potty training.

Upon examination, his pediatrician remarked on Bertrand's improved attention span and muscle tone. She also ordered labs to be drawn when Bertrand goes in for his dental and eye exams this month July.

We were all very pleased with the outcome of this visit, with the exception of Victoria* who received her 12 month vaccinations. :)

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*As usual, Victoria stole the show by wearing fairy wings, running through the hospital, smiling and waving at everyone. She remains 50th percentile for head circumference, only 10th percentile for height, 15th percentile for weight, and well ahead of her peers developmentally in every aspect. Whew! I doubt we'll ever stop worrying, but at least she tries to make it on us. :)

A Good Day

Flu Shot
Done! Bertrand's requirements for hospitalization in November are now fulfilled! But, the poor nurse vaccinating Bertrand experienced my special-needs-mommy-warped sense of humor.

• nurse: "Due to the seasonal flu vaccine shortage, we only have vaccines with Thimerosal available. Is that alright?"
• me: "That's the mercury, right?"
• nurse: "Yes."
• me: "Hahaha! He already has autism and seizures. Mercury is the *least* of his worries. Go to town."

Allgrove Syndrome
Pending. They said to try back in another week. The test is supposed to take from 6-8 weeks, and is very rare, so I guess we'll get results back closer to 8 weeks. At least from a customer service perspective, GeneDx is the best genetic testing lab I've dealt with. In the future, if we ever have to do prenatal testing, I want it done through them.

Epilepsy Conference
Attending! November 14th the Epilepsy Association of Utah Presents: Educational Conference 2009. Admission is free. It will be at East High School (840 South 1300 East, Salt Lake City, UT 84102) from 9 am - 1 pm. Registration begins at 8:00 am.

Topics will include:

• Basics of Epilepsy
• How to participate in the IEP team
• Women and Epilepsy
• Handling caregivers stress - Q & A Session
• Dravet and Febrile Research - New answers
• Disability Laws how do they affect me?
• And Much More

Autism Conference
Attending! November 18th and 19th the Carmen B. Pingree Center Presents: Parent Conference Fall 2009. Cost is $25 an individual or $30 per couple. It will be at the Carmen B. Pingree Center (780 South Guardsman Way, Salt Lake City, UT 84108) from 8:30 am - 3 pm. Registration begins at 8:00 am.

Matthew has to teach on November 19th (the only day I want to attend if Bertrand is out of the hospital), so my fabulous friend Lynn offered to babysit so I could attend! Thanks, Lynn!

Sessions I will attend include:

• SpecialCare: Budgeting for everyday needs, as well as, long term financial security.
  
• Understanding Individual Education Plans (IEPs): How and why schools use them and how to obtain one for your child.
  
• Information and advice on enrolling your child in special education services with the Salt Lake City School District.
  

Speech Therapy
Successful! At 45 minutes this was Bertrand's longest session ever! Bertrand can usually only make 20-30 minutes before his frustration becomes insurmountable. Today he displayed his ever-increasing attention span and his improved motor control. I am so proud of my son!

Home Refinance
Done! I still don't quite believe it, but we finally signed our refinance papers today. It only took 10 months, 6 loan officers, countless phone calls and emails, not to mention a few tears of anger/frustration on my part. But, it's done! All of that effort was worth the $400-500 extra we'll save each month! It'll all happily go to KetoCal. :) It still amazes me that we own a home with a yard for so little more than what we paid for our tiny apartment with a gravel patch in Atlanta.

Today has been a good day. :)

End in sight for flu shot odyssey?

Et tu, CostCo? Today, CostCo failed me. I feel like this marks the passing of my innocence or something. We were not able to get a pediatric seasonal flu vaccine at CostCo--although I was able to get the seasonal flu vaccine. Bertrand acted possessed the entire time there, so we kept getting dirty looks. (B was just tired and, as a result, a little extra seizurey since he'd worked hard at physical therapy before being wisked away, and thereby missing his morning nap, in our desperation to get him his flu shot.) Luckily, I derive some pleasure in staying visibly calm and ignoring the ignorant. :-P

However, in reality, I was anything but calm. I was panicked that I'd have to drive to South Jordan or further to find the vaccine for Bertrand. Or worse, we wouldn't get the vaccine in time, and Bertrand's diet initiation would be postponed until December! (Of course, Bertrand just fell into a coma-like sleep while being strapped in to his carseat--he wasn't worried at all.) I decided to call Bertrand's pediatrician's office again, but this time leave a message for Dr. Samson-Fang instead of dealing with her office scheduling staff (who were all unmoved by our plight last time). Bertrand is now getting the shot first thing this Monday morning!

I've been so traumatized by this flu shot odyssey that such a conclusion sounds too good to be true. I won't believe it until after Bertrand is screaming with the Bugs Bunny bandaid strapped to his chunky little thigh.

Flu Shots, Knee Update and More

Flu Shot Odyssey
Before being admitted to the hospital in November to start the diet, Bertrand needs his flu shots: seasonal and H1N1. This morning we were able to procure the first of his H1N1 shots (kids under age ten need two doses, a month apart, for full immunity) from the Salt Lake City Department for Public Health. Unfortunately, they were out of seasonal flu vaccines. Even more unfortunately, so is every clinic and pharmacy in the valley (excusez-moi, "intermountain region")! BUT, hallelujah! we have a savior! (and no one who knows me should be surprised...) CostCo has come to the rescue! Tomorrow, October 22 from 10AM to 2PM is the very last day they will be offering the seasonal flu vaccine! (Apparently there are shortages of the seasonal vaccine because all production has been shifted to H1N1.) After Bertrand's physical therapy session, we will fly to the CostCo and hopefully get needlified before they too run out!

Get Well
Speaking of the flu, my dear friend Karen and her two adorable little boys are now sick! :( We're keeping them in our thoughts and hearts. This is the same wonderful, darling Karen who has been there for us every time life has gotten rough the past few months. (Just last week she was bringing over meals when my knee was out!) We hope they get well soon.

My Knee
Today I went to see orthopaedic surgeon, Dr. Steve Aoki. As I was being funneled through the admitting process at the University of Utah Orthopaedic Center (awesome facility, BTW), the receptionist, billing person, x-ray technician, and nurse, upon hearing that I was going to see Dr. Aoki all said, "Oh! He's the best one!" "He's the doctor I go to!" "He's the doctor I take my daughter to!" "I loooove Dr. Aoki!" So, I am pretty impressed before I even see the guy. Boy was I surprised when a human being, no god-like resemblance at all, walked into the exam room. ;) Anyway, Dr. Aoki seems nice. The x-rays, as expected, show no damage. Also as expected, he thinks I likely have a torn meniscus and ordered the MRI. My follow-up appointment to go over the MRI is next Wednesday.

Big Boy Room
Tonight is the big night! Bertrand is graduating from his crib in the nursery to the queen sized bed in his "Big Boy" bedroom! We finally got and assembled his extra-long, super-fancy, bed rails! Tomorrow morning I'll take pictures to share of my big boy in the bed! :)