In my quest to find out what is wrong with Joseph it feels like I have taken Joseph to see nearly EVERY specialist in Las Vegas. I know I have not but it does feel that way...lol. Here is a sample of the past week or so.
07/18 - Nothing was on the schedule but I spent the day making calls to various places and tried to wrap up loose ends on the projects I have been working on.
07/19 - Tuesday is therapy day. Joseph has therapy (OT and PT) from 10a to 12p. Margaret also get (OT and PT) but today she did not get PT because the therapist had the gumption to get married and be on her honeymoon...lol. So took the children to therapy (all three) and John took Caitlin to the airport so she could head home.
07/20 - Therapy again today. For all the children. James get OT and Margaret and Joseph gets Speech.
07/21 - We got up and went to a WIC appointment. I HATE dealing with state and federal programs because they are so poorly run but Margaret and Joseph really need the Pedisure 1.5 formula to help them put on weight. The appointment went pretty well but it still took us 1.5 to get our of there. Then at 3pm I had to take Joseph to an appointment with Dr. Close (urologist) to have him seen and get instructions before Joseph's surgery. After the appointment was over I rushed home and had 20m before the babysitter for our once a month respite care came at 5pm.
07/22 - Margaret had an appointment with the eye doctor. OMG, there was SO much crying and screaming involved with that appointment! Margaret was very uncooperative but the eye doctor was able to determine that Margaret can see out of one eye with at leas 30/25 vision. So for now she does not need glasses. I think in one of Margaret's eye (left maybe) she may have John's weird astigmatism. Hopefully Margaret will be more cooperative in the future and we can get a better eye prescription in her. We got there a little before 8am and got out at 11:30am. By the time I got the children fed I had 30m before my Nevada PEP worker came here.
07/23 and 07/24 - I spent much of the weekend researching possible in-born errors of metabolism that could explain Joseph's conditions.
07/25 - Made calls again on Monday. I am trying to get Joseph into the Hypotonia Center at Johns Hopkins. It will cost $1500 for me to take him but I think it would be SO important for him to go. I have to figure out how to raise money to take my little pumpkin. Then at 2pm my case worker from the Desert Regional Center. This is the first time we met and we were going to go over the service I might could get for the children. I cleaned the house and I expected her here at 2pm. Then 2pm came and went so I called at 2:30p. I got her and she was thinking her appointment with me was at 3pm. When she arrives we spent 2 hours talking about the children. The meeting basically ended by me being told that I would be placed on a waiting list for services and when they were available to me I would be told.
07/26 - Therapy day again. Left the house at 9:30ish and got back around 12:30.
07/27 - Therapy day again. Same as above.
07/28 - Luckily John is a teacher and out of school so he was able to help me this day. John took Joseph to have castings done of his feet for his AFOs (foot braces to support the ankle). Then I took Margaret to Dr. Moore to see about getting her a medical diagnosis. She was diagnosed with autism and hypotonia. I have to see about her getting diagnosed with PVL and maybe cerebral palsy since she has mixed tone issues. Then I rushed back home to get John and Joseph and we headed to the endocrinologist. I wanted John there with me this time. I was planning too tell the endocrinologist off. This is the same endocrinologist that would not test Joseph for metabolic disorders and asked me if I was sure I would want to treat Joseph with growth hormone since keeping him small would make it easier for me to take care of him. After my last visit I went to Yelp! and gave the doctor a review. I like to do this because I know I would appreciate the information. I think it is of no surprise when I say I gave him a scathing review. Well, apparently either he or his staff saw and read my review. When I got there
tracheomalaciaacetaminophen for his pain. It was not enough