Zoo Therapy

We took Bertrand's beloved Miss A to the zoo today, and that's where he did part of his physical therapy!  He practiced balance and sitting on many surfaces.  Both kids had a blast.  Buddy could've ridden the carousel 10 more times if we let him.  And Victoria is now convinced that all animals love to play in the water.  (On our walk later today she was chatting up random strangers about bears in water.  And, at bath time I had to stop her from dumping a bunch of beanie baby bears into the tub.)

Sadly, Victoria accidentally deleted several photos and videos off my phone as she was watching a clip of Bertrand and herself with the swimming polar bear.  While she had probably seen it close to 100 times, she was devastated to lose the video.  We'll just have to go back to the zoo and take more footage! And you'll just have to settle for this handful of photos.  :)

The zoo currently has an exhibit of Lego Animals all over the park.  (Miss A and I kept asking ourselves, "How long would it take to build that?!")  If you have a child who loves Legos, they would probably love to check it out.

What counts?

This evening, Matthew and I watched the sunset from our house.  The sky was brilliant with orange and purple above the sparkling city below.  We watched the capitol building glow and the twinkling lights of downtown come alive.

The city view from our bedroom will soon be partially obscured by the leaves of a 150 year-old Elm in our front yard.  I love watching and listening to the birds in that tree as much, if not more than, the views of the city.

Last Friday, we met with a realtor to discuss finding a new, more accessible home.  Bertrand is only getting bigger and the cost to rehabilitate our current home for his (and our backs') benefit is substantial.  Before we make a major and costly decision, we're thoroughly evaluating all the options from various ways of fixing our current home to moving.

There are many factors to consider.  The ones that we and perhaps most people tend to focus on are the ones which are easily quantified, such as the cost of a commute (cost of a new car, hours in a car, maintenance, gas, parking passes, etc.).  Then there are related variables (opportunity costs) such as "extra time spent away from family".  How do you value that?

Or how about being only 3 minutes away from the main children's hospital?  ...especially when you have a child like Bertrand?  In even ONE emergency situation, how much would that be worth?

How do you value the joy of your very first home?  Your children's first home?  Your memories?  Your dreams?

Tonight, as I looked down at the sparkling city and spied swollen leaf buds on the Elm, my suspicion was that these intangibles are undervalued.

"Not everything that counts can be counted, and not everything that can be counted counts."

Springtime Therapy

Hard Working Man

Buddy is one hardworking man.  :)

Reader Question: Mobility Devices

Looking back, there are several things I wish I had done differently with Bertrand. Despite having experts at our disposal, limited knowledge and limited time--mine and that of the experts--kept Bertrand from simple improvements to his well-being.

Everyone mentions the importance of weight bearing through the legs.  Every doctor and therapist emphasized standing from an early age.  *No one* emphasized weight-bearing through arms.  Maybe I could've figured that out myself, but at the time I was drinking from the figurative fire hose.

Five years later, my son has malformed forearms.  (I lovingly call them his little chicken wings or t-rex arms.)  It's nothing overly obvious, but it is an impediment to proper and full use of his arms now.  And the window for fixing them is pretty much closed.  Although you better believe we make sure he weight bears through them now!

That brings me to an email I received this morning:

"I have a question regarding mobility devices.  My son is at the point where the stroller we purchased before he was born is no longer suitable for his low tone or his growth spurts.  He is still only 17 months old and would fit in just a regular stroller but the ones I have been looking at are in the $200+ range and honestly will only be useful until he gets to a certain height or weight that is lower than I would have liked.  I have an appointment with the Wheelchair Clinic on May 14th but from what I gather is that they will try to bill my insurance and I really do not want this to happen since I know my insurance will only cover one mobility device in a 5 year time frame.  I do not think my son is at the point for a wheel chair yet but a special needs stroller would be really nice to have.  I am so lost when it comes to all of this.  When I google it I am bombarded with hundreds of options and really expensive prices and have no idea what would be the best option to make for right now and to use until he needs a wheelchair (which he will most likely will in the future).  Do you have any thoughts or opinions on all of this?" 

People with great experience in mobility devices read this blog, so please comment if you can.  :)

Briefly, the mom above has an adorable son with low tone and global developmental delay.  I can only comment on the mobility solutions that we adopted for Bertrand, and not all of those were good.  With mobility devices there is simultaneously a ton of information and almost none at all for parents.

We kept Bertrand in a stroller until age three, at which point he transitioned to a wheelchair for the school district.  We instantly regretted keeping him in a stroller for so long.  Granted said stroller was a fantastic, well-rated, highly-recommended Maclaren Techno XLR Stroller (15lb. stroller with 55lb. capacity), but Bertrand has low tone.  For a kid with low tone, it just wasn't supportive enough for him to sit in it for long periods of time.  He ended up developing scoliosis in part from that stroller.

And then, because we apparently live between a rock and a hard place, I am not entirely sure that the 69 lb. Iris Zippie wheelchair he got was the right one for him.  When we went to the Abilities Expo in Atlanta, we saw *dozens* of pediatric wheelchairs.  Here in town, the folks at our wheelchair clinic are only experienced with a handful, so those are the only ones they recommend.  The Iris Zippie is pretty much the SLC pediatric push wheelchair.

No matter what mobility device (stroller, wheelchair, walker, gait trainer, etc.) you end up getting, I recommend taking your time.  Ask around.  See if there are ways that you can try before you buy.  Or look into getting pediatric equipment second hand.  Kids outgrow their stuff.  There are FaceBook, Yahoo, and other special needs groups where you can speak with other parents, get their advice or see if there is equipment to borrow or buy.

Like the mom above, it's important to know what your insurance does and doesn't cover.

Back to my original point, here are some simple tips that could help prevent, lessen, or counteract scoliosis for low tone kids that I wish I had known much sooner.  (In large part thanks to these measures, Bertrand's spinal curve improved to the point where he no longer needs to wear a back brace.)

• Switch the side their car seat is on from time to time.  (Most kids lean toward the light.  If your kid is in the car any significant period of time, this could contribute to a curve.)
• Change the side/direction your child sleeps in bed.
• Carry your child on the opposite hip.
• Feed your child with your opposite hand/from the opposite direction.
• In the stroller or carseat, bolster your child's neck, back, and hips with rolled up blankets, shirts, neck rolls, whatever it takes to help them look aligned.  (If you wouldn't want to sit or sleep like that on a plane for hours, it's safe to assume it isn't good for your kid either.)

This is just our family's experience, and we are not medical/developmental professionals.  Hopefully, others will chime in and offer more perspectives.  :)

Photos from the Phone

Meet the folks at Dr. Freeze's lab.

This is a video of the scientists working in Dr. Hudson Freeze's lab at Sanford-Burnham Medical Research Institute. They're talking about their inspiration: the patients with Congenital Disorders of Glycosylation (CDG). CDG is the group of genetic disorders in which Bertrand's disorder, N-glycanase deficiency, roughly fits.

The second person in the video is our beloved Dr. Ping He! He is running most of Bertrand's experiments, and we couldn't be more grateful to him, Hud, and everyone else in the lab.

The patients may be their heroes, but they are ours.  :)