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.

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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.

Botox, phenol or surgery! Oh, my!

Bertrand slacks-off while Mama changes his sheets. ;)

His depakote dose was increased to 250mg today.

This morning, Bertrand had a fantastic occupational therapy session during which his therapist summarized that B's biggest improvement the past few weeks has been in attitude. He is happy, engaged, willing to initiate, not as prone to overstimulation, persistent and forgiving. He hasn't really had any motor breakthroughs yet but, thanks to his positive attitude, she feels certain that breakthroughs will come.

That was followed-up by an appointment with Bertrand's rehabilitation doctor. Bertrand's right hip is subluxated between 50 and 60%. This is due to spasticity in the right adductor muscle because Bertrand doesn't stand. (As the old saying goes: if you don't use it, you lose it.) If Bertrand ever wants to crawl, walk, use his right hip, or even just not be in pain, we need to keep it from further subluxation. This poses a parent dilemma.

To deal with the subluxation, we have to deal with the spasticity or end-up in surgery. The surgery is a major one with a substantial recovery time. The other standard options for dealing with spasticity are botox and/or phenol injections. We know many kids who successfully receive them. Each has their pros and cons. The doctor feels that phenol would be best in Bertrand's case. Both of these injections will hurt. Both will wear off.

[And, in large quantities, both have killed millions of people historically. *Shudder*]

Obviously, I don't want Bertrand to lose his option to walk or crawl someday, or to be in pain, or for him to undergo a major surgery (with a long recovery time) to fix a problem that could've been prevented less invasively, such as through an injection.

So, I made Bertrand's phenol injection appointment for Friday of next week.

But something just doesn't feel right--call it my mommy-spidey sense.

Bertrand's subluxation hasn't worsened in 6 months despite a broken leg.

I think I want to give therapy a chance to work first.

I want to give Bertrand, with his new can-do attitude, a chance to do something without another painful intervention.

I know this will take dedication from more than just me.

It will take Bertrand's Daddy, and his Titi Saby, and his Nana, and his therapists, and his team at school... but Bertrand deserves a trial period.

Bertrand sees his orthopedist again in July. He'll get new hip x-rays then. That means just 4 months to get him standing at least 2 hours a day and to keep that hip from getting worse.

I believe he can do it.

Am I crazy?

We'll see in 4 months.

Yo-yo

Bertrand displays his preference for music over toys.

PAST WEEK

The last few weeks have been tough as we've dealt with Bertrand's medication changes in an attempt to achieve further seizure control.

After a 25mg increase in Lamictal, Bertrand's seizures increased. Reducing the dose--in preparation for the addition of Depakote--brought seizure numbers down a bit. (Paradoxical seizures perhaps?)

This Thursday, we will be starting Depakote (valproic acid) in the hopes that it will nix some of Bertrand's nasty remaining seizures. We won't see it's full effects until late March.

Through it all, Bertrand's continued smiles and laughter have powered us and pushed us. We don't want to lose our happy, sweet, little trickster to the fog of seizures again.

TODAY

In this morning's occupational therapy session, Bertrand successfully played with switches, sensory bins, and other toys. He demonstrated his improved reach (gross motor) and finger usage (fine motor), along with developing memory and the comprehension of cause and effect!

Nana took Bertrand to his afternoon dance class. Apparently, he protested his new aide and demanded his Ms. E back! --attempting to lure her with eye contact and indignant squeals. Hopefully, his demands were noted and he'll have her back next week. :)

Bertrand's final coup for the day was reaching up and pulling off his Nana's glasses! We were all overjoyed and so proud of Bertrand's reaching & grabbing! We can only hope to lose earrings, break necklaces, and have lots of hair pulled soon! :)

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?