Half the Energy, Twice the Spunk

Well we have some amazing news at our end - but wanted to start with some general Tylerisms....




Tyler discovered video games recently notably his game boy... unfortunately at 4 he lacks the skill to play them in any meaningful way, and tends to try (loudly at that), and eventually get frustrated.



As much as I feel bad for him, Im sure theres a life lesson in there somewhere... and Im sure it wont be long until he can kick my butt at tetris so I try not to giggle too loudly at how adorable he is when he loses.


Below is Lucy, she is Bobby Joes Sidekick. This is the cat that our poor dragon is hopelessly in love with. Im pretty sure she knows it too as she goes to great lengths to wag her tail (literally!) in front of his cage.



Lucy spends a great deal of time parking herself right here on the boys Car mat... Much to Brandons displeasure. Brandon will spend half his play time chasing Lucy off the town firehall, or school, or mall, and Lucy will just cirle around and take up residence on the construction site or train station. Eventually Brandon gives up and tells me that she is now a hill, or a monster. To spend a day in his head.





Brandon LOVES his car mat. He will spend hours happily playing with his cars, enacting very complex emergencies that require the fire department, police, ambulance, and sometimes even the coast guard helicopters involvement. He doesnt seem to mind that the coast guard helicopter they have is literally twice the size of the firehall on his car mat - apparently scale is meaningless in his little car mat world. That or he honestly thinks helicoptors are the size of sky scrapers.

On to our good news.....



Brandon started on a medication called Sinimet (L-Dopa) this past March. Sinimet is a treatment for parkinsons disease and a few other movement disorders. Brandons disease primarily affects the basal ganglia - the part of his brain responsible for movement. And as a result he has alot of the features of parkinsons disease. Indeed one of his 'diagnosis's' is 'parkinsonism'. Last November, after a viral throat infection (basically a cold with a sore throat. really not a big deal for most kids) Brandon wound up dehydrated (his worst enemy) and had a major neurological regression. He stopped walking, lost alot of control of his hands and legs and trunk, and just overall backslid ALOT.
We met a new neurologist shortly after that (ours moved) and she agreed to try to find a movement medication for Brandon in the hopes that we could get some of that control back.
We didnt have alot of hope that it would work but figured it was worth a try.

the first med was a bust. the side effects were quick and severe. we stopped it within a few weeks of starting.

The second was the sinimet.

It has been nothing short of a miracle drug.

About 5 weeks ago, the pharmacy messed up and overconcentrated the bottle of sinimet and Brandon was overdosed by nearly double on the medication.

We were pretty freaked and watched him like a hawk, but after about 2 hours he stood up and started walking. It was phenomenal.

Unfortunately we assumed it would be temporary since it was right after the overdose.

Amazingly it wasnt.

Brandon has now been walking independantly for 5 weeks. After nearly a year of being unable to do so. He is very unsteady and still falls frequently, but he's upright and loving it!!

After nearly 7 years of steady decline, we have for the first time seen some very solid, obvious improvements, and we are just beyond thrilled.

As is he.






We do recognize that it is not likely a permenant improvement - the nature of his disease is progressive and we realise that this med is only 'masking' the problem for the time being.

But right now, this week, were all overjoyed that he has the chance to have a little more normalcy in his life, for however long it sticks around!