The only thing sexier than a minivan...

Our new mobility van: a 2015 Toyota Sienna with VMI in-floor, slide-out ramp conversion.

Bertrand is convinced that all the girls will love it.  ;)

Animals Inside Out

Today, Bertrand left school a bit early to see the "Animals Inside Out" exhibit at The Leonardo, a local science museum.

Bertrand could see every exhibit unimpeded from his wheelchair since we went at an off-peak time.

Both kids loved the exhibit!

Victoria's most recent fascination has been with skeletons, muscles, and fossils.  Now, thanks to this exhibit, we can add organs (heart, lungs, stomach, etc.) to that list.

It's hard to see from these photos, but this bull is huge.  Bertrand was impressed.

The future doctor (PhD? MD? both?) examines her patient/research subject.

This giraffe was a favorite.

After the exhibit, the kids wanted a snack, so we hit the patisserie across the street.

Victoria cheerfully shared her "eclair fraiser" with Buddy.  

(He also polished off a third of mommy's kouign-amann bread pudding.)

As we left, Victoria declared the outing "a great adventure!"  We all agreed.  :)

NGLY1 Benefit for Jordan & Jessie!

The community of Jackson County, Georgia, USA is rallying around one of our amazing NGLY1 families: the Stinchcombs!

The Stinchcombs have one son and three daughters. Two of their daughters have recently been diagnosed through genetic testing they both suffer from the same very rare mutation in their DNA called N-Glycanase Deficiency, otherwise known as NGLY1. There are only 9 living children in the world with this rare genetic disease.

Everyday life for this amazingly resilient family is tough. Both girls who suffer from NGLY1 do not speak, they can not walk, they wear diapers, drink special formula, use wheel chairs and are completely dependent on their parents to meet all of their needs without ANY outside help.

Traveling anywhere as a family or even to the grocery store, is nearly impossible. The one thing that could change the quality of life for this precious family would be handicap accessible transportation equipped with a lift and large enough to accommodate the girls' two wheel chairs and the other two children. That is the goal of this fundraiser: helping them achieve mobility so their family can function more like an every day family! Please help us achieve this goal and beyond!

One $100 ticket admits two for dinner.

For tickets or donation information, please call Greg Reidling at 770-560-4628.

Halloween 2013

We celebrated another wonderful Halloween.  Our trick-or-treat crew was larger than ever.  All of my sisters were in town for our niece Gabrielle's first birthday, as well as part of Uncle Steve's family from Kentucky, and the usual Mighty suspects.

This year, the military men carried the day.  

Bertrand's amazing costume was made by his Uncle Cpt. Boojie.

The cutest puppies ever!

Gabby made a beautiful Snow White for her very first Halloween.

Bertrand loves his Miss K! She was his Halloween date.  ;)

The handsome soldiers.

Victoria dubbed her aunt Belinda, Bébé.  We all love it.

Uncle Steve with his little princess and his mom Vanessa, the proudest Granny.

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Previous Halloween Posts:

2009

2010

2011

2012

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.  :)

Power Wheelchair Reconsidered

Yesterday afternoon, Bertrand went to Shriners Hospital to see the physical therapist in regard to the power wheelchair.

We have been practicing hard and at a minimum of three times a week, as per the therapist's direction. The therapist was deeply impressed by our dedication. Bertrand has made a great deal of progress. We couldn't be more proud of him.

However, the therapist at Shriners didn't see Bertrand's hard work and efforts in the same light.

First he said that insurance wouldn't cover the chair for Bertrand. So we found ways to get one donated and pay for one.

Then he said that Bertrand would need to practice 3 times a week. So we found ways to get Bertrand to practice at least 3 times per week.

Now he said that Bertrand's cortical visual impairment would likely prevent him from passing the safety requirement...

The pieces of the puzzle finally fell into place. He won't recommend a power wheelchair for Bertrand no matter what we do.

He had already made up his mind about Bertrand. He was just being obtuse about letting us know it.

***********************

Bertrand's cheerleading squad is vast. (And, I love you all for it!) So, whenever someone doesn't pick-up the pompoms, I am confused and, honestly, sad.

But, I think this is actually an opportunity in disguise. We were back to spreading ourselves a bit thin. (I know. I know. It's chronic. Apparently, I can't help it!) This situation has me re-evaluating the merits of a power wheelchair.

While Bertrand does enjoy the power wheelchair, he also increasingly enjoys standing up and taking steps--activities which are conveniently assisted by the TAOS. Such weight-bearing activity is great for his bones, his muscles, and his bowels. Overall, much better for him than using a power wheelchair.

Maybe the power wheelchair was a distraction? Maybe the therapist at Shriners actually did Bertrand a favor?

On our drive home from the appointment, I told Bertrand, "Forget that guy. He doesn't know you. You'll WALK. That'll show him!"

And when he does, you better believe he'll be surrounded and cheered by the people who believe in him.

Juggling

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. :)

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!

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.

Power Wheelchair?

I love this image from Ottobock. Can't you just imagine Bertrand staring up at the fishes like that? :)

Bertrand had his regular 6-month wheelchair fitting today. He had grown a lot, but the adjustments were made quickly. His chair will get another tune-up in July.

While his chair is in great condition, I broached the subject of a power wheelchair with the technician. And, he put Bertrand on a list for a power wheelchair evaluation! The eval will likely be sometime in March at the soonest.

There are 2 routes to getting a power wheelchair--assuming he qualifies. We can request a donated chair or we can find a chair ourselves. (If we can find or buy a power wheelchair ourselves, then they will fit it for him regardless.)

Bertrand has been working with a mobility specialist at his preschool, and his home OT and PT will add to his training. Hopefully that combination will give him enough of an edge when he gets evaluated. (Cue "Eye of the Tiger" and montage!)

Going to the 2012 Abilities Expo!

Bertrand received a surprise Christmas gift: a trip to the 2012 Abilities Expo in Atlanta, Georgia!

The Abilities Expo takes place February 17-19, 2012 at the Georgia World Congress Center and admission is FREE!

We're excited to see and try out items for Bertrand!

School Parking Spot

Remember our parking issues last year?

There are two new wheelchair accessible parking spots at Bertrand's school.

Please note the sign. :)

Intensive Therapy & School Bus Follow-up

INTENSIVE THERAPY: Last Friday, Bertrand was evaluated for an intensive physical therapy program located in Provo, UT called Now I Can. By the end of his 30 minute evaluation, the therapist had Bertrand on his knees, free standing.

We were sold.

Bertrand will be starting the program on January 2 for 3 weeks, 4 hours a day, 5 days a week. (This was their soonest available opening.) We've set an ambitious goal for him: mobility. We have to strike while the iron is hot. After all, who knows how long this seizure control may last? Unfortunately, this means that Bertrand will miss the first 3 weeks of school next year, but we hope that this program will be worth it!

SCHOOL BUS: Last Thursday, Bertrand, Victoria and I took a walk down our alleyway with the mayor's office ADA coordinator, Michael Stott. Michael was very compassionate and attentive. He has asked the City's pavement manager to look at the alleyway. Now we're just waiting to hear back. My understanding is that our neighbors will have to agree to and pay for the improvement. I'm not sure that will go over well. I'll be speaking with Bertrand's teacher about some of the alternatives at our upcoming parent-teacher conference.

Can Bertrand ride the school bus?

There are so many reasons why I love Bertrand's "Dancers with Disabilities" class! Not the least of which are the people we meet there and the wealth of special needs information that gets exchanged. Below is the email I just wrote to our constituent liaison, at the encouragement of one of the volunteers in the class.

My family and I live in district 4. My 3 year-old son, Bertrand, has many disabilities and is in a push wheelchair. He attends the special education preschool program at Ensign Elementary.

Bertrand can't ride the school bus because the alleyway behind our house is unaccessible--it is far too uneven and rough. He practically got launched out of his wheelchair the time or two we have attempted it. We tried putting bigger front wheels on his chair to help with the bumps in the alleyway to no avail. (The front of our house is facing a steep hill with many steps & no ramps, so it is unaccessible as well.)

Basically, there is no access for him from the house to the sidewalk to get to the bus. So, I currently drive him into school Monday
through Thursday, but it breaks my heart that he can't ride the bus like the other kids. He would love it.

Is there a way for the city to pave the alley so Bertrand could get to his school bus? As far as I know, it is public property.

Thanks for your time and consideration!

Vehicle lift on order!

Today the vehicle/wheelchair lift for the back of our car was fitted and ordered. We're going with a Bruno Curb-Sider. I can't wait for it to get here! Bertrand's wheelchair weighs an awkward 50 pounds, Bertrand himself weighs about 40 pounds, and the 8-month pregnant belly I am hauling weighs 30+ pounds. I've been lucky to stay out of traction so far, but only by declaring surrender and resorting to using Bertrand's Maclaren Techno XLR (stroller) rather than his Zippie IRIS (wheelchair). However, his wheelchair is by far the better seating system, so I am eager to get him back in it! We're aiming for an early March delivery and install. Keeping fingers crossed that all goes smoothly!

Bertrand's New Wheels!

Bertrand and Daddy stylin' outside Shriners Hospital.

Bertrand was fitted for and received his sparkling, new, cherry-red wheelchair today! You may not be able to tell from the pictures below but he loves it. He is clearly very comfortable and supported. This chair will replace a lot of time he currently spends in his car seat and stroller--neither of which are ergonomically suited for long periods of sitting--and should go a long way to preventing (and possibly undoing?) the curve in his spine.

The arrival of the Elmo Chariot (maybe we should hold a naming contest?) doesn't mean Bertrand will be in a wheelchair all day! But while he is sitting in it, this wheelchair encourages him to use his neck, back, abdominal and leg muscles to sit correctly. He'll still work on standing and sitting independently both at home AND at school.

I keep repeating this last point to myself. We are NOT giving up on Bertrand standing, sitting, crawling or even walking! Of course, Bertrand obviously needs the chair. In fact, he probably needed it much sooner, but his yo-yo prognoses and development kept us guessing.

I'll admit that the arrival of this wheelchair has been a bit bittersweet. In many ways the wheelchair is a neon sign--to the public and to me. Today, I am telling myself, it is a neon sign saying my son is big, strapping THREE year-old scholar whose life is an open book. Only HE will decide what his future holds. And, his parents will love and support him no matter what.

Bertrand was unsure at first about the clear tray. (He got used to it quickly.)

Bertrand was not a fan of having the chair tilted back or of the shoulder harness.

The bare bones of the wheelchair. At first glance could pass as a stroller?