Archive for February, 2011

The Nerve

I had posted previously that Max was having headaches and my pediatrician wanted us to go to a neurologist. I called four different ones and two did not take our insurance, one could not see us until the middle of March, and the last one had an appointment for today at 10:30. Max woke up on Monday with the croup and today his cough sounded not so great but I figured we should keep the appointment since we are leaving town on Saturday and I could not get another one until the middle of March. We arrived at 10:25 and the receptionist handed me four pages of paperwork. I realized I should have asked on the phone if I could fill out the paperwork beforehand but this really irritates me for so many reasons. I think paper should be eliminated from all doctors’ offices.  The waste of my time and paper is ridiculous but that is a whole other story. So when I turned in the four pages at 10:40 I asked how the doctor was running and she said he wasn’t even there yet. HUH???? Not even there yet. So why didn’t she call me before I even got there to tell me this? I looked at the schedule and saw that one patient before me was supposed to have gone at 9:30 and one at 10.  I sat down and waited. The doctor came in at 11 and took the first patient which lasted 50 minutes. While waiting I asked the other patient’s mom if she always waited and she said yes… every time and usually for almost 2 hours.  Then the 12 o’clock patient and her mother came in and they said they always wait and he never shows up before 11 even if you have the 9:30 appointment time.  Really???? So at 12:10 I went to the receptionist and said I had to leave at 12:45 to get my other son from school. She said the initial appointments were at least one hour so obviously I did not have time to wait and he was going to be longer with the patient he was with. I then asked for my copay back and she called the doctor to tell him I was leaving.  He came out and asked me what was wrong. I told him that I had two children with polycystic kidney disease and spent a lot of time at doctors and never did I have to wait 2 hours to see a doctor. I said I was very frustrated that I wasn’t called in the morning to say he was running so late. He said his morning was hectic and I said every parent in there complained he always ran 2 hours late.  I told him he was adding unnecessary stress to my life.  He didn’t even seem remorseful.

The nerve of some doctors. I told Max afterwards that our time was more important than waiting 2 hours to see any doctor. I understand if emergencies happen but that was not this situation. I want Max to know he can question doctors and does not have to wait 2 hours to see a doctor and that we should stand up for ourselves. I did say doctors do go to school for a very long time to become doctors and most are really good and we need to respect them but when I feel like they are not respecting me then I need to stand up for that. Their time is definitely not any more valuable then mine. It kills me when doctors are late but then say they will charge you if you are late for an appointment. I wish I could charge them for every minute they keep me waiting. And to top it off I took off work this morning to take Max to this appointment.


February 16, 2011 at 4:15 pm 3 comments


I registered Gabe for KE a couple of weeks ago and although he doesn’t start until September I have my concerns. I am very worried that he is going to fall through the cracks. I am still fighting with our local district to get him OT services, which does not look promising at the moment. We have our meeting on Friday so we will see what happens with that. That is one concern that his fine motor skills/writing skills will not get the attention they need once he’s in school. Plus there is the whole issue of him wetting his pants. It is somewhat better since he started the medication but it’s not great. Plus he needs constant reminders.  Then there is the fact that is he often tired and cannot make it through the day. KE is full day. The bus comes at 8:20 and the boys don’t get off of it in the afternoon until 3:45. Even if I were to drive him it would only save 10 minutes in the morning and 30 in the afternoon. Still a long day.  And then there is the issue of who his teacher will be and how sympathetic she will be to his unique needs.  I know it seems off for me to be worrying about these things 6 months in advance but it will be here before we know it. Plus I really want to get this whole OT thing squared away and the potty training issues. I like our public school but worry it is not the best place for Gabe. But I don’t know what other options I really have.

February 15, 2011 at 2:12 pm Leave a comment


Again I have to post that another baby died from ARPKD today. There’s really nothing else to say. This shouldn’t be happening and yet it is. I wish I could do more for these families. I think about these babies and their parents all the time and really hate this disease.

February 7, 2011 at 10:11 pm Leave a comment

Hard week

I’m having a hard week. I’m not sure it is something specific but I know the news of these babies who have died from ARPKD has made me sad. I think I’m also overwhelmed with the boys appointments. Max has been having a lot of headaches over the last few months and I have been procrastinating calling the pediatrician because I kept saying they were sinus headaches and had so many other appointments to think about. I finally called today and she wants me to take Max to a neurologist. I’m sure it will be fine but it’s just one more thing for me to worry about and one more appointment for me to go to. I’m also not sure if I wrote here that we started taking Nate to a child psychologist. It’s weird that I felt unsure of if I should write that here. It has been so easy for me to write about all of the other appointments we go to, but it is such a social stigma in our culture to go to a psychologist and I think I feel judged about it. I know those are my own issues but I just had a hard time writing about it. But then again I feel like if I can write about it and be open about it then maybe it can help another family struggling with something with their child. The thing is that I feel like Nate is not always happy and it’s hard for him to be the middle child between two brothers who have a kidney disease. I think it is probably hard for him to be the healthy one.

So now I get to add neurologist to my “ology” list!!!  And psychologist too! But I think I already had that one because I see a therapist…… ahhhh…. so many appointments…… so many doctors…… so many “ologists”…….too much stress. Why can’t it just be easy for everyone. Really. Why can’t life be easy and not so stressful and happy and healthy all the time. Is that asking for too much??

February 4, 2011 at 10:11 pm 2 comments

February 2011
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