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,
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...
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...
Hi Max, See if you can find some Salmon - worked for Roxy when Chicken wasn't tasting too good!
ReplyDeleteHi Anne, I wish that would work! No dice.. nothing has motivated that feeding instinct... He is currently sitting in his cart with an Honest Kitchen "Beam" in his mouth "Dried CatFish skin" which he'll occassionally chew on.. but seems to just suck on it more than anything else.. Eventually he'll eat... he's definitely making it easier to spoon feed him and it's a lot cleaner than syringe feeding him by mouth.. hopefully we can get that feeding tube out soon.
DeleteMax was not ready for bed (primal nugget = bed time cookie), so he was not going to have anything to do with it for breakfast! After all, it was time to get in his cart and Go, Go, Go! How is the PT going? Change in meds schedule and PT 3 times a week probably has both you and him tired. Hoping Max is getting bits of tasty food (and not having any tummy problems) so he can get rid of that ole tube soon. Dude and Dude's Mom
ReplyDeleteYou got that right! He's raring to go at 7AM every morning - if not earlier! PT is going well. The first week was a little rough for him but I think he really enjoys it now, especially since he's getting massages and cold laser therapy! The med schedule change has actually worked our really well and we're just about sleeping through the night now too!
Delete