November 28, 2010

Happy Thanksgiving!

Happy belated thanksgiving from our family to yours!
We are forever grateful for all of you (online & off) who so selflessly support us!
We love you all! Happy holidays!

You see snow? I see no internet connectivity. ;)

The turkey weighed almost as much as Bertrand!

A toast to our family and friends, near and far!

November 16, 2010

My favorite day in pictures

This post is part of a blog carnival hosted by Ellen at "Love That Max"! The topic is "my favorite picture of my child", which I've had to modify to "my favorite day in pictures" because I couldn't pick just one! These were photos taken with my phone on September 1st 2008. The three of us had just moved to Salt Lake City in July and finally finished settling into our first house! Bertrand was only 8 (almost 9) months old. At the time, while Matthew and I accepted that Bertrand was a little delayed, we hadn't quite fallen down the medical rabbit hole that was to come. This beautiful September day was just me and Bertrand and not a care in the world.

I would caption the photos, but they got me a little too emotional. I don't look at these photos very often because it hurts. There is no way Bertrand and I could've enjoyed that day any more than we did. I'm not sure I could've enjoyed it as much, or at all, if I knew that it was likely the last time I'd see him play with his cars, lift his rubber ducky, put his hands to his mouth, attempt to crawl, mimic my silly faces, sit without falling over from a seizure...

Someday, I hope I can feel that happiness again when I look at these pictures.

November 14, 2010

A Big Change

Bertrand's expression upon hearing "it's a girl". Priceless. :)

Last week was eventful! My father came to visit us and was a keynote speaker at the Spectrum Academy's Autism Conference. Bertrand had his IEP evaluation and qualification meeting. (Everyone from the Salt Lake school district was great and, not surprisingly, Bertrand qualified.) Lastly, we learned that Bertrand will be a big brother to a SISTER due April 8th! Bertrand was a bit unimpressed by the ultrasound (see picture below) as his sister came no where close to resembling his favorite red monster, but mom and dad couldn't be happier. :)

November 9, 2010

Busy day, busy week, busy month.

Bertrand likes to show off his rolling, tracking and tummy time skills PLUS his open hands!

The subtitle for this post should read: Can Mama please take a nap? As Matthew mentioned in his last post (and as Bertrand's twitter followers know), October was quite busy for us. The month included but didn't limit itself to:
  • Basement flooding
  • House plumbing work
  • Cleveland Clinic registration
  • Hens' first eggs
  • Matthew's travel
  • Oktoberfest
  • Nana & Grandma visit
  • Vegas (parents-only) weekend
  • Blog World Expo 2010
  • Girls' Night Out with Niki & Erin
  • Flu shots
  • Wheelchair fitting
  • Minivan shopping
  • Disability parking placard
  • Preschool visitation
  • Nana & Papa's new UT house
  • Aunt Sabrina's new UT job
  • First snow
  • Halloween
  • And last, but not least, Bertrand's broken leg
There is a LOT of carryover into November from this list and quite a few new things being added. Therefore, even though I feel like I should backtrack a bit, plenty of these topics (in addition to more!) will get covered this month.

Bertrand and I will be sitting in on a Dancers with Disabilities class through the University of Utah Virginia Tanner Dance Program later this afternoon. But, weighing most on my mind are: tomorrow, seizures, and preschool. I'll cover tomorrow (surprise!) tomorrow and seizures on another (hopefully more eventful on that front?) day. For now, my main issue is preschool.

Bertrand turns 3 next month (ACK! I need to plan a birthday party, don't I?!). This is when he transitions out of Early Intervention and into the public school system through the means of a document called an Individualized Education Plan (IEP). Normally, Bertrand would enter a special ed public preschool in January. Unfortunately, this is not a course I am satisfied with after completing visits to several preschool programs.

Matthew and I were under the impression that school should be a means of gaining new skills--or at the very least, preventing the loss of them. Without going into too much detail or naming names, we didn't feel at least one of the preschools would achieve this goal for Bertrand. We are currently looking into private and hybrid public-private options for Bertrand. Unfortunately, trail blazing takes time and effort! Meaning, we now have to go through all of the steps for all of the options for schooling instead of taking an established route for just one.

Bertrand's IEP evaluation is this Friday. I hope to have more details then about the public option then. And next week, the team at Bertrand's current, private "preschool" is evaluating him and scheduling a parent meeting some time afterward to discuss Bertrand's progress. They'll let us know what options they feel are available for him at that time.

Fingers crossed!

November 5, 2010

Coming up for air

Bertrand being comforted by Puff, his toy dragon.

Since last Tuesday, Bertrand has had a small cold. He seems fine and chipper during the day, but in the early morning and late evening he is MISERABLE. His nose gets stuffy and he stays up (past midnight last night) thrashing in bed. I've tried the all the usuals (motrin, humidifier, distraction, vicks, etc.) but, since Daddy is out-of-town this week, I am quickly running out of steam and am getting sick now too.

That said, there are a lot of pluses to this situation.

(A) Bertrand's cold is running its course similar to one of his pre-steroid colds, so I think his immune system is getting back in gear--just in time for flu season!

(B) Bertrand's stuffy nose REALLY bothers him. Before, Bertrand used to act sick but had this inhuman ability to tolerate stuffy noses. Now he is MISERABLE just like any other kid his age (or adult my age) should be. I think this is progress!

(C) Bertrand is using his hands to wipe his nose!!! AND SUCCEEDING! Sure, it looks gross, but that is some great motor control!

Before, if we did anything to Bertrand's nose (wipe, bulb, etc.) and he tried to brush us off, he'd whap his eye, ear, forehead, cheek... pretty much every part except the part he was trying to hit. It was sad to watch, but boy did it make doing things, like wiping his nose, easy! Now I have to fight-off his little hand like every mom should. :)

There is probably plenty more I should say, but while B is still asleep, I may try to get that nap I've been meaning to take since Wednesday. :)

November 3, 2010

Ortho, Pediatrics & Neuro! Oh my!

Bertrand's femur.

Most of the time, I am shocked by how little is accomplished in one day. This morning, I was shocked by how much was accomplished in one hour.

8:00AM Orthopaedics
Bertrand got an x-ray and was seen by doctor Dr. Stephanie Holmes. (Out of the 4 orthopaedic doctors we've seen at Primary Children's Medical Center, Dr. Holmes is my favorite.) She cleared Bertrand's use of the stander (2+ hours, start slow), recommended some stretching, and mentioned permiginate IV as something we should discuss with B's pediatrician. Dr. H's thought is that the bone created with permiginate is more brittle, which may not be what we want as a part of Bertrand's issue is that he doesn't brace himself when he falls.

8:30AM Pediatrics (& Starbucks)
Bertrand's stuffy nose disappeared last night, so this was simply a paperwork run. Bertrand delivered several forms for his pediatrician to fill-out, including his Utah DMV Form TC-842 "Disabled Person And Physician Disability Certification" to apply for a disabled person's car plate or placard. That his disability is deemed "permanent" rather than "temporary" (yes, the doctor has to check a box) was a bit depressing for me, so that led to a pumpkin spice latte--the ultimate comfort drink--at the hospital Starbucks.

8:45AM Neurology
At the elevator we ran into Bertrand's neurologist. She didn't like the way Bertrand was looking or how tired he was. She asked after his genomic sequencing (results come January) and was unhappy to hear he'd suffered another break. She wants Bertrand to have a dexascan. Furthermore, she said she'd follow-up with her colleagues at Johns Hopkins to see who the best 2nd opinion on Bertrand's myoclonic-astatic-epilepsy (MAE / Doose Syndrome) would be, so she could write us a referral. In her opinion Bertrand isn't getting worse but he isn't improving. "When I run into my patients I think it's fate trying to tell me something."

Clearly, fate approved my Starbucks run. ;) I hope to hear from the neurologist soon, but if not, I foresee a follow-up email later today! In the meanwhile, I need a nap.

November 1, 2010

Dance Class for Bertrand?!

Studio room at Virginia Tanner.

This past weekend at a birthday party, a new friend mentioned a Dancers with Disabilities Dance Class through the Virginia Tanner Creative Dance Program at the University of Utah. (Up until this point, I'd though "Virginia Tanner" was a near mythical institution for dance prodigies in Utah for which you had to sign up at birth.) Understandably, I couldn't believe my ears! And then I couldn't believe my eyes once I was sent the class description**:
Creative movement classes designed especially for children with disabilities who, because of their unique challenges, may need special attention in order to fully enjoy the freedom of movement, creative self-expression and therapeutic benefits of dance.

Classes maintain a smaller student teacher ratio. For children who use a wheelchair or may need assistance in moving, dance partners (senior members of the Children’s Dance Theatre or other volunteers), are often available. Students are invited to participate in the annual Virginia Tanner Creative Dance Program spring show.

When I read this, I started to cry. I hadn't even realized that I'd given up on the possibility of Bertrand being able to do NORMAL extracurricular activities until this moment. I mean, he does Musikgarten and hippotherapy, but dance? when he can't crawl or walk? and a spring dance show?! The entire concept was moving (no pun intended)!

Since he is turning 3 this December, Bertrand can no longer attend Musikgarten because it is administered through Early Intervention in our state. Anyone who knows Bertrand knows how much he loves music. This dance class could be the perfect transition! Plus, I can finally fulfill the dream of being that glowing (read: annoying) parent sitting in the front row with camera, video recorder and an entire cheering section for my son!


** A typical class (one hour, once a week) for a child Bertrand's age at the Virginia Tanner Dance Program runs $222.00 for a semester and $422.00 for a year. The Dancers with Disabilities Class is only $25 a semester and $50 a year! Clearly someone realizes that medications, doctors' appointments, wheelchairs, etc. don't come cheap! But the opportunity to see your disabled child have fun and dance is priceless. :)