Angry with doctors!

[Guest guest]

Hello everyone! Hope that everyone is doing well! As for us ok. Jordan still has

all that congestion and a bad cough. He also is throwing up after most of his

meals. It is pretty gross. It comes out of his nose too. He had a nissen

fundoplication (for reflux) done when he was a month, so I don't know if he is

suppose to be throwing up. I hope that with this new year coming things better

with him. We are suppose to get the MRI done in January before the 22nd. I hope

that we find out whats wrong with Jordan. I sent the old mri films to Dr. Dobyns

in Chicago and he told me that it didn't look like Jordan had PMG. Only on the

lower left side of his ear. The rest of the brain doesn't look like it has PMG.

I will be sending the new MRI films to Dr. Dobyns again. It really sucks not

knowing what is wrong with my son. I am really angry with the fact that they

lead me to believe that they new for sure that Jordan had PMG. It is going to be

2 years believing this. Its hard enough trying to deal with the fact that there

is something wrong with your child. They think that he has Lissencephaly. From

what I've been reading its not any better. Then the stupid vendor company has

not send me any feeding tubes, syringes, etc etc.. in 2 months. Can you belive

this Sh*t! For 2 monthe the same feeding tubes and syringes. Oh but thats not

all, on December 11th to be exact the GI doctor order 2 new g-tubes because the

one he has now the flap doesn't work and all the food leaks out. We would tape

it shut but since Jordan can't use any kind of tape but foam tape and the vendor

company hasn't sent me any I can't do anything about it. I have been nice, rude,

cried, yelled, screamed, harrassed , and threaten these people. I called the

head hancho of the vendor company and my insurance and filed a compliant on all

the people that I have spoken to and have not done anything about this problem.

Now tomorrow I will be driving to the corporate office to yell in there faces

and give them a piece of my mind. I'm sick of people thinking that because I'm

only 21 I don't know what I'm talking about. They did this to me in the hospital

too. These people are wrong and they got another thing coming if they think I

won't make trouble. Don't get me wrong I don't like conflicts with people but I

will speak my mind if they like it or not. When it comes to my kids I'll do

anything to make sure they get what they need.

On the upside Jordan is getting his helmet on Wednesday. He is still recieving

pt untill the end of Janurary, thats a whole other battle to come soon. He has

his first appointment with the dermatologist on Thursday. He started crawling

really well now, on all fours and everything. He still wakes up with cough but

not as much so I get more sleep. Its my baby Shayling's birthday on Thursday.

She'll be a year old. This is all the good stuff right now. It makes up for the

bad, some times that isMRI Well soDobyns I sound like a angry person but the

truth is that right nPMGI am, I am angry with the world! I just pray that all

these bad feeling and problems PMGn go away very soon.

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