Max got his feeding tube removed!

Yesterday was a big day!  Max got his feeding tube removed! He hadn't used it at all over the last 2 weeks so it was time to bite the bullet and give it a go!  He's doing well.. Although yesterday must have been a REALLY stressful day. He's never had an upset tummy through any of this and yesterday and last night he sure did- vomiting and puking all night long. He's doing ok now... Just wondering if they gave him something at the hospital that didn't agree with him. The Internist mentioned that his tube was clogged when I asked if they had drained his tummy... (probably b/c he was eating whole foods again and veggies... which don't fit well through the tube! Wonder if they tried to flush it with something.. anyway - he seems to be doing ok so far today... He wanted to sleep in his cart last night.. thank goodness for the cart...

He's definitely feeling better physically without the tube and can scoot around more in his cart. His tummy was so upset last night that he scooted himself up and over the 2 inch ledge into the back door on his own - he also managed to turn the corner and roll down the ramp on his own... he still needs to master breaks though...   He starts PT back up again tomorrow. 

Today's objective - keep him eating and drinking and happy... I did manage to get him in a sternal position today too and he tried to get up - not quite there yet.. but we're still working on..

Pics to Come..

Max Trying to Stand Up

They say a picture is worth a 1000 words... well.. how about a video! Or a few videos


Max standing in his cart working on lifting his head 10/9/2012

Max sitting in bed demonstrating how he can now turn his head 10/9/2012

Max working on pushing himself up to a standing position  10/16/2012

If you think that last video was something - check this one out!

Max looking around and turning his head

Here's Max up to his latest tricks today!  (October 9, 2012).  Isn't he handsome?!!!  Not sure if you can notice.. his eyes moved towards me when I asked if he wanted to go for a walk later in the video!

The latest trick

Max's latest trick is pushing on his front leg stirrups so that he can stand up in his cart and lift his head and then turn it to the side and then sit down again and get his head stuck in the side... his head rest may need to come off soon...

Another morning of Max eating his whole breakfast by spoon!  A whole cup of the Honest Kitchen!

More Progress!

After a little hiatus Max went back to Physical Therapy on Wednesday and he's been doing great!  They changed up his routine from range of motion exercises to more massage and between that and the cold laser I'm seeing more of a difference.  His back legs actually are doing more of a walking motion when he decides he's going to walk, his front arms are still behind with the program but he has some movement down to his wrists (yep... he has limp wrists still).. however he now can push using both arms when they are up in the stirrups of his cart and when he's positioned right he's cruising through the house crashing into things and rolling over Buttercup - not sure how long that will last before she loses patience...

He's been doing pretty well with eating by mouth. Sometimes it's a little slow and can take up to an hour to get a full can in there.  Tonight I was able to get him to eat his regular food finally - so he's back to eating the honest kitchen. He ate a whole bowl, no problem.. however he's still not eating it on his own, I do need to pry his mouth open to spoon the food in there - except usually the first  but he'll open his mouth up wide for that one... and the more full he gets, the more he clenches his teeth shut!

He's grunting and sighing sometimes when he wants something and smacks his lips when he wants attention.  His eyes are starting to follow a little more... and.... he's starting to lift his head up in his cart!  Below is a video - all be it not a great one... of him lifting his head up a little bit.  (In Physical Therapy they've also been having him practice standing up on his own  and leaning against them. It's helping to build up strength in his upper arms and his neck. )

The other thing that Super Max has started to do is push himself up to a standing position if he's  propped up on pillows the right way and his legs are bent under him...   Will get a video of that one of these days - but he requires spotting..
 
 

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... 

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!