Wednesday, September 19, 2012

Quick update

Sorry for not posting in a while. I've gotten a few emails from Max's followers asking how he's been doing.  He's been chugging along.  Some days are better than others just like with the rest of us.  I've also discovered that the better he's positioned in his cart the more he'll cruise around. We've had a couple of days where I place him in front of the TV and then I turn around from my desk a few hours later to find him in the kitchen or by the back door.  He has been rolling to the back door when he needs to go potty (provided he's positioned in his cart the right way.  We've had to stuff foam and towels around him to help position him right. Since he still has the feeding tube he tends to lean away from it so it doesn't hit the side of his cart.

I took him in to meet with Dr. Dumont about doing Physical Therapy and getting a little extra work in by someone who knows what they're doing vs someone like me who's winging it, and he starts his first day of therapy today.  We've modified his medication schedule so hopefully he's more active earlier in the day. He was getting his prednisone at 8pm and keppra at 11pm and was getting active around 5pm.  So now he's getting his prednisone at 6:30 and keppra at 8:30.. He falls asleep earlier, and is awake much earlier in the AM, and seems to be a little more active earlier in the day. The plan is for Mr. Max to go to PT 3 times a week. My goal is to see if we can get him to move around better in his cart.  Anything more than that is a bonus!  He is aware enough to go to the back door when he has to go potty... so I think that will give him more independence.  He's been spending a lot more time in his cart too.

Dr. Dumont mentioned a quote by St. Francis,

 "Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible."

The other goal that Dr. Dumont gave me was to get him off that feeding tube.. This is going to take more time from me which is going to be the tough part but it really needs to be done.  He will eat if I syringe feed him, no problem. So... we started yesterday and he ate most of his food by mouth.  Breakfast took about an hour and a half to get all of it in.  I fed him his normal breakfast.  Then I also gave him a can of organic grain free speciality food in balls and he did really well with that -I did a few balls at a time over the afternoon, and then fed him dinner by syringe in his mouth.  To be honest the balls were a little easier and a lot less messy than the syringe feeding - however, I know the quality of the food isn't as good as his regular diet... so I'll probably keep it mixed but the extra calories don't hurt.   Then last night when I was feeding everyone their pre-bed cookies of freeze dried beef, I gave Max one. To my surprise he started to gnaw on it and went to town chewing on it!  He hasn't done this since before his bleed! He ate a whole Primal nuget and a bite of a 2nd one and then had the rest of it in his mouth...   I tried again this morning he took a few bites and then spit it all out - but really put his whole body into the effort of spitting it out.. I guess it didn't taste good the next morning?!  (Difference of opinion on taste if you ask Buttercup though).  Anyway - we'll keep working on feeding by mouth and the meat balls and the freeze dried raw nuggets and see how he does.. (Waiting to see how his tummy holds up. I added liver to his food a couple of weeks ago and poor little guy had some horrible gas.)

I'll update after Physical Therapy.. but we're still trucking along!

**warning.. the above video contains some little boy humor... 

Wednesday, September 5, 2012

Super Max!!!

Today is Sept 4, 2012, exactly 3 months since Max had that nasty cluster seizure and went into that coma.  A lot has changed but the one thing that hasn't changed at all is that Max continues to amaze me each and every day!

Today he learned how to move his cart on his own!  He's been working really hard and getting that cart to move. He still hasn't mastered steering but that's OK!  He's able to get himself to where he wants to go (for the most part now!)  When I call him, he responds!  Today when the dogs went to bark at the window when the mailman arrived, he started to try and roll his cart over to where they were too!

His Eddie's Wheels Cart has been amazing! I wish I had had this from the very beginning. I think Max just being in a standing position where he can have full range of motion of all of his legs in a natural position has really made a HUGE difference!  His cart has also been something that stimulates his mind and his body to work and heal.  The one thing I know about Max is that he never gives up.. and he's just showing me that every single day!  It's amazing to think where we were 3 months ago and where we are today!  We still have a ways to go, but he has some independence back and that's a huge thing for him!  He can go potty when he wants without worrying about messing on himself, and he can now move on his own... now if he'd just eat out of a bowl and a whole meal!