He’s so checky by taking off his ventilator because I don’t have one but I don’t even know how he does that because he’s so cleaver by doing that and I love his smiles it’s so cute and I am glad he’s so happy
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.
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
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 ?
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.
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.
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.
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.
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
He’s so checky by taking off his ventilator because I don’t have one but I don’t even know how he does that because he’s so cleaver by doing that and I love his smiles it’s so cute and I am glad he’s so happy
He’s a mess when he wants to be. And yes his smile will melt your heart.
Do you find the Epidiolex helps him a lot? You are doing such a good job taking care of him. Awesome Mom!
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.
I love you nan work 7 so so that I
That's a very informative I like learning about how you feed through a feeding tube I also love this channel❤
Thank you.
Jonathan is such a sweetheart
Thank You! I think so too. ☺️
indeed I agree his mom is beautiful ❤
@@jonathansjourney2265best wishes 2 u and Jonathan and 2 his mom I hope he is doing well my payers 2 u and the fameily❤
He just got back from the hospital where he got a new trach fitted and checking his lungs.
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
Oh ok.
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 ?
Yes he does but he is fed through the J tube so aspirations aren’t a risk.
Are you okay you haven't uploaded in a while
Hey. Yes we are fine. There should have been one uploaded last Thursday. ruclips.net/video/hfWt26IfsSE/видео.html
I hope that he gets better
Thank you!
This is the first time I watched your journey would you tell me what is wrong with Jonathan
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.
Question why is he on a diet
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.
@@jonathansjourney2265 he is so cute
Thank you!! He’s a sweetie.
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
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.
How old is he
He is 5.
20:11 did the bag smell like plastic ? Haha
Hi I love video
Thank you! I’m glad you enjoyed it.
Good night
Hope you have a good night too.
Ebony Sanford
What are you doing
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.
Why
Please explain what you mean?
Hi
Hello!!!
Two of my brothers have g-tubes.
Really? They are very beneficial.
@@jonathansjourney2265 I have total of 5 siblings. They all have a disability and are adopted.
Oh that’s great!! I would love to adopt!!
I’m not going out of the
Out Of The?
Why is he on a diet? When he needs all the calories he can get. He looks like he is really thin and not getting a enough. Get him off the diet.
He’s is on what his doctors want him on. Since he isn’t mobile he doesn’t burn as many calories as a regular person would.
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.
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.
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