Momoftwinsplus1

Hello.

How areyou all doing today?

I am coughing, and still feeling bad. I wanted to let u know a little secret. Now don't tell her this, but I'm telling EVERYONE I can on YouTube to sub to Momoftwinsplus1.

If u are a YouTube member u can do it too. PLEASE DO. It would mean a WHOLE LOT OF THE UNIVERSE TO ME.

Thank you!

God bless.

Much Love and resect Peter Johann

Happy Thanksgiving everyone!!!!!!!!!!!!!

Hello.

How is everyone doing?

I'm doing very poor this morning. I aspirated my formula a few nights ago, and had to go get a chest X-Ray, and other tests the other day. I can't quit coughing, and its getting really hard.

I did it Sunday night when I was eating. I got chokes, and that night I was up ALL NIGHT coughing, and gasping. The other morning, I went to the hospital to get it checked out.

They did a chest x-Ray, & some other things.

It was a little spot there, but nothing THAT BAD.

I just felt AWFUL!

I'm sitting here coughing as I write.
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Well, I would like to wish EVERYONE a happy thanksgiving. Today is the day when the Pilgrams found AMERICA.

We should be Thankful that we don't have to work as slaves. Let US be THANKFUL FOR WHAT WE DO HAVE instead of being sad for what we DO NOT have.

I am glad that at least i can see a little bit, that i have great parents who love me, and have always taken care of me, for great supplies that help me breathe, and help with my writing and all my school work, I am thankful for YouTube friends, and I am thankful for billions of other things.
There is a girl on YouTube who I want to tell u about because I suppose there are some people watching on YouTube that might be keeping track of this SOMEHOW.

This girl who's name is Lori.

She is a YouTube member and she has a husband and three little children.

Ella Derek, and EMMA.

Emma is a child that really means A LOT to me. She has a trach, and has cerebral Palsy. She can't swallow, so she has to use a special machine every nce and a while to help her get salava out of her mouth. She must breathe through a hole in her throat that is connected to a ventilator. This ventilator helps her breathe. She is so sweet. She is strong no matter WHAT happens. Se has touched my life. Well, Lori has been such a help to me when I have been sick lately. For almost half a year she has given me support, and has REALLY meant a lot to me.

I just want to take a minute to thank her.





Dear Lori. Today is the da we all need to give thanks to everyone for helping each other and to the Lord.

I want to thank you for all you have done for me. You have given me support, and have touched my life. I will NEVER forget you, and will NEVER quit thinking about u. You have been a blessing to me, and everyone else who knows you, and I think u deserve all the kindness u can get AND MORE.

I can't tell you how many times u have brought tears to my eyes by yourkindness and by your touching words. I wish the world had more people like YOU Than we would have a MUCH BETTER HOME. You bring light to the worls, and children with special needs really have been blessed by your kind works.

Thank you Lori Ella Derek, EMMA, hubby, and everyone else who helped Lori.

Thank u everyone in Lori's church for putting me on your prayer list. You have a GREAT GREAT GREAT GREAT REWARD IN EAVEN AWAITING YOU.

THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

xoxoxoxoxoxoxoxoxo

Hello.

Hi.

How is everyone?

I am doing GREAT!

Having health issues, but that is always going to be so.

ALWAYS.

I've started a Tay-Sachs support group, that helps with children and families of children who have Tay-Sachs or even SANDHOFF disease.

the support is on YouTube.

WE ARE RAISING AWARENESS OF Tay-Sachs and Sandhoff disease because we want to help find THE CURE for the disorder.

Its ALWAYS FATAL.

Both forms Tay-Sachs are ALWAYS FATAL.

Sandhoff disease is a severe case of Tay-Sachs which is ALWAYS fatal in itself.

So, if Tay-Sachs disease is ALWAYS fatal, than think of how bad Sandhoff disease is.

WOW!!!!!!!!!!!!!!!!!

I couldn't imagine having a child with Tay-Sachs.

Well, just to let u know, that if u have a YouTube account u can join my group.

If u DO NOT have a YouTube account and u know of a family of a child, are in a family with a child, or EVEN HAVE A CHILD with the disorder, than PLEASE GET A YouTube account.

We will give u all the support we can give u.

THANK YOU!!!!!!!!!!

Much love and respect Peter Johann

Broken glass, and broken lamp.

Hello.

Today I was going into my room to get my formula so I cd eat, when the cord to the lamp was in the way. I didn't see it, and by the time I caught it, it was too late.

I stepped on the BLACK cord, AND, pulled the lamp down. I didn't know it, until the glass was broken.

CRAAAAASH BANG.

Well, I thought, OH NO.

I DID NOT SEE THAT.

I started picking it up.

My sister comes in there, and starts yelling at me, saying that I did it and wasn't watching what I was doing.

Her son must have been playing with it, and left the cord out where it cd be stepped on.

I'm the one however who has to take the blame.

She is like, "PETER? WHAT DID YOU DO?" I told her in a calm voice, "It was an accident. The cord was out there and I didn't see it." "IT WAS BACK BEHIND THE BOOK SHELF." I am not stupid. I know where the cord is. She wasn't in the room when I did it, so how is she suppose to know? Well, she isn't. Well, that's my sister's way. She is mean, and really has no respect for me. Oh well, it cd be worse. But Mom told me not to worry about it.

Although, I'm VERY ticked off still. Well I have to go get a UA at the hospital, so I will talk to you later.

Much Love and respect Peter Johann

P.S. today when I get home I will tell you about the adventure I got to take into class to play the piano to the kids in the Kindergarden class.

More about that later.

Here is a list of pictures for you all.

Hello.

These are some pictures of pieces of medical equipment such as three pulse oximeters, a suction machine, and a ventilator.

I think that is all.

So how has everyone here been?

Just to let you all know, that you don't have to be a member to comment on my blog. Just click comments below my post, and you will be taken to the comment's section, and you will need to enter your E-Mail adress,, and your name, which by the way will be on the comment's section. Well your NAME WILL, but your E-Mail adress won't I don't think.

I hope you enjoy.

Please comment on my posts.

My blog is absolutely flat on viewers except one, which is my school teacher.

He likes to check up on my blog, and see when I update it.

He says that I aut to write about what I study in school more and not so much as the medical equipment.

hahahahahahahahaha.

He is a character.

I like working with him.

I tell ya, if you ever have him as your school teacher you are a VERY VERY VERY VERY lucky person.

He's really blessed me.

Well I'm gonna go but I'll update more on what's going on later.

God bless.

Live and respect Peter Johann

Cough Assist

Hello.

Here is a picture of the Respironix Cough Assist.

This machine is used in the removal of secretions for patients with neuromuscular disorders such as SMA, MD or there might even have been some cases in which it has been used for children with Tay-Sachs, but I don't know.

The patient puts a mask on his/her face, and the machine is swiched on.

The machine puts posotive pressure on the lungs, and then quickly shifts to negative pressure thus removing secretions out of the lungs.

The machine is used either in automatic or manual mode.

Manual mode means that the patient controls when the machine goes into positive negative pressure. AUTOMATIC means that the machine goes into automatic and manual mode based upon settings dialed into the machine.

Each breath from positive to negative pressure represents a cycle.

A series of cycles is needed to remove secretions.

This machine is not painful but does kind of feel a little bit weird.

The machine is used in patients with a mask, a mouthpiece, OR an endotracheal/tracheostomy tube adapter.

All three interfaces basically work the same way, the only difference is that they are placed on the patient differently.

Each interface is painless, and fits snug.

The Cough Assist or In/exuflator is becoming more avalable, and it's use is known by more people. A lot of patients say that the cough assist in/exuflator is painless and has avoided hospitalization.

The Cough assist machine is easy to use and portable.

It plugs into a wall outlet, and if necessary, it can be adapted to go into a car plug that hooks up to a cigarette lighter.

Those can be purchased at your local store, or electrical store.

The cough assist machine saves lives, and SHOULD BE USED BY ALL PATIENTS WITH SMA, MD, or any other Neuromuscular disorder that reduces the ability to cough.

Thank you!

Best wishes, and love and respect to ALL PEOPLE.

Peter Johann

Good morning.

Hi.

How areyou all doing?

I'm really not doing well AT ALL.

I'm stopped up, and have junk in my chest that I can't get out.

I feel absolutely HORRIBE.

I talked to my Doctor about a cough assist machine, he said NO.

He said It wouldn't help me.

So, I'll have to continue using my suction machine, and that can be REALLY painful.

Imagine sticking a tube into your windpipe to get that junk out.

THAT MUST REALLY HURT.

IT DOES.

Oh well.

Its better than having a tracheostomy I guess.

Although a tracheostomy might help me get my stuff up better.

Well, I have to go eat, because I have a chiropracter's appointment, when I'm sick like this, it usually takes me about one hour to eat.

I have to gasp for air, becuase my airways are pretty much closed when I get sick.

Well, have a good day.

Much ove and respect, Peter Johann