Night Time Feeding & Med Routine

[@valleygirlgg]

Do you find the Epidiolex helps him a lot? You are doing such a good job taking care of him. Awesome Mom!

[@jonathansjourney2265]

Thank you! To be honest he’s on so many seizure meds (4) I’m not sure which does what. He has Tonic seizures that only happen during sleep right now and they are very short in in duration. He also has a VNS implant that I feel helps him as well.

[@mariealdridge1655]

I love you nan work 7 so so that I

[@GretchenParker-horselove]

That's a very informative I like learning about how you feed through a feeding tube I also love this channel❤

[@jonathansjourney2265]

Thank you.

[@jaynepeach4689]

We always gave the feed during the day time and the patients were more upright to stop the feeds from causing aspiration pneumonia. Does your son sleep sat upright during the night ?

[@jonathansjourney2265]

Yes he does but he is fed through the J tube so aspirations aren’t a risk.

[@jaynepeach4689]

I used to care for a lot of people with PEG tubes. We were not allowed to crush meds everything had to be made up by the pharmacy into liquids and we didn't alter the make up of the medication

[@jonathansjourney2265]

Oh ok.

[@carriereeves1122]

Jonathan is such a sweetheart

[@jonathansjourney2265]

Thank You! I think so too. ☺️

[@FrancoLombardo82]

indeed I agree his mom is beautiful ❤

[@FrancoLombardo82]

​@@jonathansjourney2265best wishes 2 u and Jonathan and 2 his mom I hope he is doing well my payers 2 u and the fameily❤

[@jonathansjourney2265]

He just got back from the hospital where he got a new trach fitted and checking his lungs.

[@meisha27801]

Hi I love video

[@jonathansjourney2265]

Thank you! I’m glad you enjoyed it.

[@jamesmarinelli6715]

I hope that he gets better

[@jonathansjourney2265]

Thank you!

[@jamesmarinelli6715]

How old is he

[@jonathansjourney2265]

He is 5.

[@caseyslifewithcp3727]

Are you okay you haven't uploaded in a while

[@jonathansjourney2265]

Hey. Yes we are fine. There should have been one uploaded last Thursday. kzbin.info/www/bejne/npe6pWVsfsumiac

[@margarethyatt-yx1gi]

This is the first time I watched your journey would you tell me what is wrong with Jonathan

[@jonathansjourney2265]

He has a genetic disorder called BPAN. It is very rare. It normally shows up in girls. It’s an X chromosome and since girls have 2, their symptoms are less. Most of the little boys miscarry. Jonathan’s a miracle. He also has Cerebral Palsy, HIA, and a seizure disorder called Lennox Gastaut.

[@mariealdridge1655]

Good night

[@jonathansjourney2265]

Hope you have a good night too.

[@caseyslifewithcp3727]

Question why is he on a diet

[@jonathansjourney2265]

He was gaining too much weight. He was getting to where it was difficult for him to move and breathe. He was at 99th percentile for weight. He’s now in the 80th.

[@caseyslifewithcp3727]

@@jonathansjourney2265 he is so cute

[@jonathansjourney2265]

Thank you!! He’s a sweetie.

[@caseyslifewithcp3727]

Can he not go to the bathroom without Miralax I only use it as needed so I didn't know how that worked with somebody that used it everyday

[@jonathansjourney2265]

He can, but sometimes he will go days without having a bowel movement. We have found that if we keep it daily, he’ll keep himself regular.

[@ebonysanford769]

Ebony Sanford

[@EmaAyers-w1t]

What are you doing

[@jonathansjourney2265]

In this video we are showing some of Jonathan’s night time routines. We need to work on how some stuff has changed since then.

[@matthewpearson4981]

Nothing is wrong with your son...so why would you dare to even put him on a diet?! He needs all the calories he can get.and it's not safe for him,idk if you trying to keep him small,so you can pick him up.and it would be easier,but he needs to grow.and get big,he not gone stay that same size for ever,kids do grow up...feed him,and get him off that diet.

[@jonathansjourney2265]

I think I will let his GI doctor make that call. He is able to breathe and move so much better so I’m guessing at his next appointment he will go back on a regular feeding routine.

[@toyandgamezone2028]

In a previous comment, his mom, or whoever typed the comments, said that he was having trouble moving and breathing with the weight he was at, so his parents are making the best decision for Jonathan

[@EmaAyers-w1t]

Why

[@Tetra3Ne56scur]

20:11 did the bag smell like plastic ? Haha

[@poo66151]

Two of my brothers have g-tubes.

[@jonathansjourney2265]

Really? They are very beneficial.

[@poo66151]

@@jonathansjourney2265 I have total of 5 siblings. They all have a disability and are adopted.

[@jonathansjourney2265]

Oh that’s great!! I would love to adopt!!

[@EmaAyers-w1t]

Hi

[@jonathansjourney2265]

Hello!!!

[@nikitanaghibi]

I’m not going out of the

[@jonathansjourney2265]

Out Of The?