So, here's my Wednesday:
I am "stuck" in this FCAT room and I figure that I can quite a bit done... I have decided that it is high time to get some things checked off my punch list. So the last two days, I have stopped procrastinating and I made a "kagillion" phone calls. Yeah. Go me.
Ryan's orthotic broke because the velcro came unglued. As a result, he is not steady falls more. I wanted to know if I glued it myself, would it void the warranty? I called the orthotic's place several times to talk to someone who should know how I go about getting this fixed. They never called me back. So today I called again -because they didn't return my previous calls. To replace a strap is $40. No thanks, it just needs to get glued. So the lady told me to bring the orthotic in and they can glue it, but they will need to keep it for several days. No thanks, he kinda needs them. So as it turns out, I can glue it myself because there isn't a warranty... Ugh, I could have fixed this on Sunday when it broke and saved my self the time and used my motivation on something else.
Genetics results from bloodwork done in November: I called the geneticist, no returned call. I went to the pediatrician. Nurse Jodi looked in his chart. Everything is "normal." No surprise, but why does everything come up normal when my kids clearly aren't "normal."
24 hour urine test. Back in November when I went to do the bloodwork, I needed to do a urine collection. I attached the little bag to Ryan and gave him lots to drink. Oops, I didn't get the bag on right so there was leakage, big time. We got about an ounce. No worries, it needs to be 24 hour's worth of collection. I put this off for a good 4 months. Because how do you collect urine for 24 hours from one child who is barely potty trained and the other child who needs a bag. PAIN IN THE NECK!! Anyway, while at the pediatrician's office yesterday, I ask for the lab slip. No problem, they start working on it. But they don't know the exact test. [Meanwhile, I have this sweet child from church with me and we are supposed to be doing confirmation stuff. Luckily she doesn't mind this little side trip.] I tell the nurse that I will go home and look at the notes from the geneticist and see what I can find. Not much more information there... so I call Jodi and give her what I know. Hopefully by next week we will have the paper work ready.
Dr. Kadasen: In December, I took Zach to see this developmental/behavioral peditrician to see what he thought about Zach. I think Zach is so complex and I heard this guy would do a great job "peeling Zach's layers". The appointment was a nightmare because I had to bring Ryan and Ryan was a booger. I think I blogged about this... Anyway, Dr. Kadasen set up the parent conference for two weeks later. The doctor ended up in the hospital because of complications of asthma. No big deal, we'll reschedule. At the end of January, the nurse called and said that they haven't forgotten about us and she will call to reschedule. She asked me some questions because she was transcribing his notes. Sounded good to me... She would be in touch. Well, it's the middle of March and I hadn't heard. I decided that I would go ahead and call. The number is disconnected. I say something to a friend of mine - but didn't mention the doctor's name and then says... "I was just meeting with a parent and she has been waiting to get her son in to see Dr. Kadasen for six months and then he died!" [The doctor not the son]. Well, that explains why I haven't heard anything... I figured that I could at least get some notes, right? So, I call the school he was affiliated with and pressed 3 for Dr. Kadasen. The phone says, "Goodbye" then there's the dial tone!! So I try again. Same thing. Finally, I try a different extension and I get a different number to call. I call, they tell me to try a third number. I do and leave a message. I have waited forever to find someone who could take the time to understand Zach from a medical perspective and he dies!! Ugh!
Project Rainbow respite care. Free babysitting! Sign me up!! I played phone tag back in December and then gave up. So I called today and left a message. Phone tag round two.
So, all this time, effort and motivation and what does it get me? Glue the orthotics yourself, your kids are "normal", wait on getting Zach to pee in a jar, all my hopes in Dr. Kadasen figuring out Zach is gone, and phone tag about free babysitting. All this motivation and I'm back to where I started. It might be another 4 months before this spurt of crossing of the punch list motivation comes back!!
Better luck next week, eh?