This is about my life with my 5 yr old daughter who has mild to moderate spastic quadriplegic cerebral palsy, Schizencephaly ,Partial Seizures, Allergies, Asthma. And the challenges we are faced with on a daily basis along with the new challenges that we will be faced with as our family expands to include another baby girl.
Tuesday, February 23, 2010
The one question that people always ask me
How do I manage to stay so calm and sane with all that we deal with on an everyday basis?. I am starting to ask myself this. Because I really am not sure anymore how I manage. especially after the way today has gone. It started out a good day other then the snow i was expecting a storm but not much of that going on right now they are saying snow for the next 10 days wtf. i dont want snow not now audrianna has surgery in two weeks...... Ok lets try this again a good two hrs or so after I started this lol. So anyways like I said my say started out somewhat good other then the constant pelvic pain I have been having for the last 15 1/2 weeks of pregnancy. Sigh which the midwife keeps shrugging off but it keeps getting pregressively worse. So after barely being able to sleep again last night and waking up in tears cause of the pain. i decided to call my obs office at 9am when they opened. So I called them they said they would have a nurse call me back so I figured I would lay down on the couch for a half hr cause it usually takes that long to call back. well I fell asleep and woke up an hr later still no phone call so i called them back. The nurse said that she left a message with my midwife because she saw that I had been seen a few times with this pain. and that she would call me back once she talked to the midwife. Anyways its almost 4pm and I still havent heard anything the pain has subsided for now but as usual its gonna come back it always does. So since I was waiting for that call i had stephen go onto our cable account thing online and have all house calls forwarded to my cell phone cause Audriannas meds needed to be refilled and I wanted to go out and grab something to eat for stephen and I for lunch while audrianna was at school, and I also needed to go to walmart to get audrianna a booster seat for the car cause shes outgrew her carseat finally. Well while in line toc ash out at walmart my phone rings. So I answer it its audriannas school nurse she wanted to let me know audrianna had 2 small seizures at school and after the 2nd seizure during physical therapy her right leg started to shake. so I get off the phone with her after and finally finish checking out and head to burger king to pick up lunch and head home. As soon as I get in the door the nursing agency calls me apparently having audriannas bedroom on the 2nd floor is a concern both for my safety since I cant lift audrianna and her safety they didnt realize she cant walk up and down stairs with assistance. and that we should consider temporarily moving audrianna to the 1st floor for after surgery or permanently problem with that is that the only room left is the dining room which is where we eat do they seriously expect us to get rid of the room that we eat in. The other concern was beyond stupid like what to do with audrianna while the nurse preps her meds. mind u this is the new nurse who has only come out once so far. the other nurse has no problem with any of this. so almost 2 hrs later after hearing how fantastic we are doing as parents to audrianna then throwing in those two concerns i get off the phone with her. Only to be pissed cause I didnt get to eat my food yet and it was cold. I cant stand cold fast food and i hate rewarming it. Then as i get nice and comfortable on the couch i get a phone call again didnt recognize the number but answered it anyways. It was the adaptive equipment department at francsican childrens in boston. Calling to inform us that Audrianna has an appointment with them on march 2nd at 1pm. asked if we could switch it to the first cause we will already be in boston 15 minutes away for audriannas pre-op appointment. They say unfortunatly they can't because the equipment vendor only comes out on tuesdays so that means that we have to spend all day in boston monday for her pre-op then go home only to come back for 1pm on tuesday for her to get measured or whatever there doing for her so she can get a new walker the one she has is just a plain old guardian strider. we want the kid with the hip and knee stabilizer for better support for audrianna and then a stander cause she uses one at school and we would love for her to get that kind of stretching at home. So that gets al set up i get off the phone with them i get maybe 30 minutes to sit on the couch when the phone rings agan its the school nurse. Shes calling to tell me audrianna has had two more seizures so thats 4 total throughout the school day each lasting 4-5 seconds except the 4th one that one was 8 seconds. so i get off the phone with the school nurse and call the neurologist to let them no. they called back once got what meds auds is on and i am waiting to hear back again. Thankfully audrannas napping on the couch cause her home nurse is running late. Im ready to pass out im tired but i need to go out and get audriannas meds, and am thinking hotdogs for dinner for her tonite with mac and cheese who knows but i know i am craving shrimp lol. I still wanna know how i manage to keep so sane although i think maybe todays an excuse to go a bit nutty for a lil while
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