As promised - more pictures.
Tonite the boys decided to be firemen before bed... They both have more firefighter helmets, firegear, firetrucks, and general fireman paraphanalia than any children I know. Brandon even has a full set of honest to goodness, used, Turnout Gear hanging on his wall with his real Deputy Fire Chief helmet... they are serious fans of the firefighters.
And of course their helmets coordinate with the blue jailbird jammies....
They do this quite regularily together - and their games get quite involved... tonite they were rescuing the cat from a burning building apparently. The cat wanted nothing to do with it.
At bedtime Brandon requested that I take some pictures of Mr Bear...
Mr. Bear has been with us for some time. He was MY bear as a child (the date of manufacture is indeed 1982!) and was well loved by the time it got to Brandon... since Brandon claimed him, Mr Bear has been repaired many times, is bare in many places, and has seen the inside of more operating rooms than most grown men... he has been around. But, in Brandons eyes, he's still Mr. Bear and we all love him for the comfort he brings our boy.
This one needs no explanation - this is a tough smile to catch on film as Brandon rarely sits still long enough to get it... Just had to share!
As promised - more pictures.
Well whatever virus Brandon had this weekend has run its course and he managed to avoid the hospital thanks to his feeding tube!
He's back at school and 100% back to himself, so were pretty happy with that. :)
Not much to update at the moment, and no photos to add just yet - but soon!
Posted in by Keely | 1 comments
No pictures today.
Brandon woke up miserable, had a few tantrums and promptly threw up the 2 bites he managed to eat of his breakfast.
He's been on continuous slow tube feeds of a juice/milk/water/fruit blend all day just to keep some calories and fluids going in the hopes that this is mild and short lived and we can avoid an admission.
So far he's kept it all down but he has a habit of doing so until just after he falls asleep then throwing up shocking amounts... he's settling into bed now, so we will see how the night goes.
Hope Hope Hoping we dont end up inpatient.
It's been a LONG day... when he's unwell he gets very very demanding so we generally dont go more than 2-3 minutes at a time without him asking for something, crying for something, whining, or yelling at us... its completely mentally exhausting.
And to top it off the neverending threat of having to make a late night run to the ER means we dont get to have a glass of wine after they go to bed to unwind... since we may need to drive. (and those of you who know me, know that 1 glass of wine and I am well beyond 'driving' form...)
so they are both settling in for the night, my house is clean, and I am washing clothes and packing a hospital bag just in case.
About to settle in with some juice, natchos, and some friday night television.
wish us luck.
Posted in by Keely | 2 comments
Well due to popular demand I have a video of Brandon on the move...
Again - were all pretty thrilled over here!!
Not to be outdone, Tyler decided he wanted a video up too.... Here he is singing his speckled frog song...
Now take that minute long clip... multiply it by ALL DAY LONG... and people wonder why im so tired by the time this boy goes to bed! :)
Seriously though - he is quite the entertainer!
Posted in by Keely | 4 comments
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!
Posted in by Keely | 7 comments
Today I'd like to introduce you to one of our best friends.
In February of this year Brandon had a feeding tube surgically placed. The technical name for it is a Gastrostomy Tube - its like a little 'blow up valve' on a beach ball, implanted just below his ribs, directly into his stomach, so we can feed him when he's unable to eat.
(what you see in this picture is the button (the 'blow up valve' with the flap opened up) with the extension (tube) plugged into it - the extension is held in place by a fancy tape/rubber grabber thing called the Bone - this just holds everything in place while hes hooked up - when he is not 'hooked up', that flap on the button closes, and the tubing and such is gone - all he has is a small flat rubber button against his skin)
Because of Brandons disease, his swallowing muscles are seriously affected, and while he can eat alright currently (thanks in part to some new medications we are trialling), he cannot eat enough to gain weight, and as soon as he becomes ill in any way, he cannot eat much at all... indeed we spent many weeks in the hospital last year because he was unable to eat at all and needed IV support... not a fun way to spend Christmas break let me tell you.
So in February we made the decision to go ahead and have the tube placed.
As much as we hated this initially (and we still hate the reasons for it), it has been life changing for Brandon. He has been in the hospital only once since having it placed, and has finally started gaining weight.
We are able to blend up food in our super blender (Vitamix - there are only 2 blenders on the market with enough oomph to blend food to a fine enough liquid that they can be tube fed through a button like this - the vitamix and the blendtech - both ringing in at 500$+ and seriously making every other blender on earth look like a cruddy spatula at best), and blend up anything and everything.
Brandon gets hooked up to 500ml's of 'supper' when he goes to bed, usually containing about 400-500calories total. It is pumped through this button as he sleeps, and by midnight he is done.
Since we started the blended food Brandon has gained 2lbs (after about 15 months of not gaining anything!), and his overall health and energy has increased tremendously.
this extremely difficult step for us to take ended up being one of the best decisions we have ever made, and we are so thankful to have it now.
Saturdays are pretty low key around here.... This morning the boys enjoyed our newly resubscribed sattelite service (in a moment of insanity I cancelled our service in the summer... once the snow hit the ground i quickly realised that was not going to fly through the winter... amazing how stir crazy 2 boys can get when they cant go outside to play!).
And by 'enjoy our sattelite service' I of course mean they horsed around endlessly on the couch while mom and dad guzzled coffee like it was going out of style.
Left to their own devices, the boys are pretty self sufficient when it comes to entertaining themselves... even without the sattelite they are quite happy to find ways of keeping busy.... Today there was an ad hoc game of hide and seek... unfortunately our house sucks when it comes to hide and seek, and the ONLY place to hide on the main floor is behind the treadmill... still... they managed to act surprised the dozen or so times they found eachother there.
When it comes to the mornings we lucked out with our boys... they rarely wake up before 730am, and when they do their usually very low key and happy to just hang out and read or watch cartoons until about 8am or so... at that point they start threatening a mutiny if they dont get food, but up until 8am their golden!
This of course is Bobby Joe. Bobby Joe is our bearded dragon - we inherited him from a good friend and he has fit seamlessly into our lives over the past 9 months. Bobby Joe has a crush on our cat Lucy and regularly does his 'mating dance' when she is nearby. When not doing his mating dance, Bobby Joe is usually doing just this - sitting and watching us... sometimes he eats, sometimes he sleeps... mostly just sits.
Tyler introduces him like this: "This is my pet Bobby Joe! Hes a dragon, but dont worry he cant breath fire yet". Im not sure if he thinks Bobby Joe will at some point be able to breath fire or not, but thankfully, for now, our dragon is fireless.
Posted in by Keely | 0 comments
This picture about sums up our youngest.
Tyler is our little nerd - the child absorbs every bit of information you throw at him, accurate or not. Last summer, as an experiment, I taught him the alphabet in a totally random order (which was doubly hard because I had to first LEARN it in said order), and I also taught him the noble gases (yes - his mommas a nerd too.). Much to our surprise he actually REMEMBERED all this, and was more than happy to regale anyone who would listen.
Sadly daycare put a quick and brutal end to the mixed up ABC's and he now knows the 'right way'... but he does still know his noble gases, and where stars come from, and why the moon doesnt fall into the earth, and where the sun goes when it goes down (for the record he resents China for taking his sunlight at night).
He also spent the better part of his hair cut last week explaining in great detail to the hairdresser, what exactly all the different blood cells were called (white, red and platelettes) and what they do.... To say she was impressed is an understatement. Word travels fast in our little town and we now have random folks stopping us at the post office and asking Tyler to tell them what their white blood cells are for.
Dont even think about asking him where his food goes when he eats it...
And as the above picture demonstrates - when Tyler is not sitting asking questions like "mom what does respect mean?" he is busy running. Running upstairs, downstairs, around the house, through the yard, to the van, from the van, around his room, through my room, into and out of the bathroom, up onto the counters, back into the yard, and well, you get the idea... he has more energy than I can even phathom.
When not nerding it up or running, Tyler is usually found in dads shadow. This summer (at least according to him) he helped Dave build our deck. More accurately I think he yammered on and on about what 'galvanized' means and why they galvanize things to dad while dad tried desperately to escape into his mug of coffee - but Im sure Tyler will grow up comfortable in his knowledge that he helped build our deck.
Lastly - I would be remiss to leave out Tylers love for anything creepy, crawly, gross, or alive in any manner of the word. He can spend hours digging in the dirt for the promise that there are indeed earthworms down there. He dutifully helps fill the compost bin because he knows in his heart hes feeding his worms. He loves his pet Dragon Bobby Joe (Bearded Dragon - very cool), and his cat Lucy, and he lives for anything that crawls, creems, slithers or slides across the floor.
Thats our little boy...
Stay tuned - next up I will introduce you to Brandon!
Well I decided to step over to the dark side and create myself a blog.
Up to now I have had all of Brandons medical stuff updated on his Caringbridge site which can be found at www.caringbridge.org/visit/brandonandtyler .
I will likely update both sites together but expect to include photos and such here...
To the dark side!
Posted in by Keely | 3 comments