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So sorry this is so long, didn't intend for it to be, but once I started typing I just couldn't stop. Hope it makes sense cuz I am now drained and not in the mood to proof it.
OMG I think I want to round up all docs and just slap them!!!!!! Ok so RaeLynn has never used her right leg or arm normally. I have been saying something about this at every doc's appt she has ever had no matter what we were there for. NO ONE would listen to me. Then finally in Nov I got a doc to listen to me(the only one I don't want to slap right now). Now to truly understand what all is going on here you have to understand the situation out here in BFE. We don't have a pediatrician, well we do now they just came to the area recently, so RaeLynn's PCP is a General Practice doc and I love him, but he has 3 different clinics he works at so he is not always in the office and most of the time when you go in to the docs office you don't see him you see his PA. Now his office does not do well baby visits or vaccinations, you have to go to a different clinic get those done and have the records sent to his office. (Keeping up so far? Crazy, right?) So we still haven't seen her actual doc since she was a week old. So anyways, I am at the other clinic I use(which btw is a 1/2 hour drive to get too) for her well baby visit in Nov and he listens to me, yay! He sends us to an Orthopedic doc in Dallas. They want us to go see a Neurologist. So they send the info that they have and what they would like done to her PCP so he can make a referral(not the doc the sent us to them but ok, insurance needs the referral to come from the PCP anyways so I would have had to have the one doc send it her her PCP anyways). I FINALLY get in to the docs office(don't get an appt with the doc but with the PA, lovely, don't get me wrong I have always liked the PA real well and never had any problems with up until that point anyways), go in to get the referral. The PA get pissed at me because I allowed the other doc to send us to a specialist and because that other doc called in ECI to come start working with RaeLynn and gets so mad she grabs up her laptop and RaeLynn's file and storms out of the room and I end up finishing the appt with a nurse(royally pissing me off btw). Gist of the appt comes to : "Well because of the way her insurance is she has to have an xray done to be sure it is not something physical(even though we have already seen the Orthopedist) . So we go get an xray on a Friday, on Monday I get a call from her PCP's office they found a dislocation she needs to see an Orthopedist, she has already seen on, well she needs to see one we will make a referral, no I will call her's and set up an appt, ok. So I call her Orthopedist and they have me send the xray report and copy of the images to them. They call me and tell me there is NOT a dislocation, there is a very slight displacement but NO dislocation, she still needs to see a Neurologist. So since I was having so much trouble getting a referral they made one to their neurology department in house(they had hoped I could get one closer to home since they are over 500 miles from me). Now during the course of this appt and this phone call mom figures out that HER neurologist also sees baby's, so she asks his office if she can give her next appt to her granddaughter, that even if her(RaeLynn's) insurance wont cover it for some reason my mom will pay cash for appt. Couple of days later the office calls her and say sorry can't do it we don't take her insurance. (SCREAM!!!) So she goes to her appt and asks her doc directly what she needed to do to get her seen by someone, anyone. He tells her what to do, woo hoo, I am so excited I am suppose to take the baby to him on Mon Feb 3, give him a couple of days to get the paper work together and his office would call with a time and address(to his other clinic not the one mom goes too). So excited just waiting on a phone call.(Now remember I still have a referral in with the other neuro and it has now been 3 weeks since that was made and NO WORD from them) They finally call yesterday, and I tell them no sorry I was able to get her in to see someone she has an appt on Monday. Ok no problem. Then this morning mom calls her doc to find out why we have not heard from them yet on the time, the women at the desk knows NOTHING. Calls mom back oh just take her into the ER on Monday and they will do the tests and then call the doc in, WHAT!?!?! You want me to take my 9 month old baby into an ER during Flu season, really? Why what am I suppose to tell them is wrong? Well you tell them whatever it is. Which makes no sense to me at all. So I call the other neuro clinic back is there anyway I can go ahead and make that appt after all, no you need a new referral(so that means at least another 3 weeks, right?) So here we are 2 months after I was told to take her to a Neurologist and I still don't have any appt right? Think I am going to scream!!!!!
Luckily my dad happen to have his 1st appt with my mom's neuro today(although none of us is real sure why they sent him to a neuro when he was suppose to be going to a cardiologist) and he talked to the doc again today. He is suppose to be working it out and we are suppose to be going to see him at 8 on Monday morning.
So as I type I am sitting in a hospital hold my sweet baby. We were admitted yesterday. They did a CT scan and an EEG. Before they even got the EEG completed the doc came in and said they had enough from it (she wasnt sleeping anyways like she was suppose to be) and told me he wanted to talk as soon as the got her disconnected. So I go out in the hall to let him know I was ready and he had me go to the nurse's desk so he could show me the CT scan results. Apparently she had a stroke right before during or immediately after birth. That is why she does not use one side of her body properly and the reason behind many other things as well.
I don't know what happened I typed a reply but it didn't post. Not real sure yet what game plan will be. Will include lots of therapy, speech, physical and occupational. We have another appt with the neuro on the 6th. Hopefully we will know more then.
Thanks! and yeah you told me but it is nice to be reminded that I have some support from you ladies. It has been so hard. Trying to get things lined up and wanting to get started on some therapy but not knowing what to do yet.