I guess I should explain what my title is all about. First off I want to say that for the 6 years that Dr. Reynolds has been Elizabeth's pediatrician I have so super impressed. She has really sttod up for Elizabeth and gone to bat for us on many occassions against other doctors when she felt what was in the best interest of Elizabeth. I like her so much that even though we now live an hour and a half away from Lansing I refuse to change doctors for Elizabeth. However, right now I am slightly irritated with Dr. R and her office. I called last week because Elizabeth's G.I. had called and rescheduled Elizabeth's appointment that was suppose to be for tomorrow until April 14th. I wasn't happy about this because as most of you know we have been having some very mysterious and confusing stomach issues with Elizabeth since December. So being the concerned parent that I am, I called her peds office and left a message for Dr. R or her MA to get a hold of me because of my concerns. Well here we are a week later and I still haven't heard from them. I don't know if they just feel that my concerns can wait until I see G.I. on April 14th or what, which brings me to my next bitch of the day.....
Being I was upset about the reschedule of appointment I called the nurses line for her G.I. I pretty much told the nurse my concerens with the fact that Elizabeth has had diarrhea every monthe for the last 5 months for 3 to 4 days and that she is complaning a lot about her tummy hurting. Well the office called me back and their exact words were, "We have never seen Elizabeth for diarrhea in our office. Her original referral to us was for her GERD and delayed gastric emptying. You need to get a hold of her primary care doctor and talk to them about the diarrhea. If they decide that it isn't viral or bacterial then they can refer her again for the diarrhea." Okay, come one people!!! You have been following Elizabeth for over 2 years now and you need a damn referal for diarrhea!! Hello, isn't gastro intestinal another word for stomach and intestines and ummm, doesn't diarrhea come from those places. So I am pissed to say the least! I'm actually worries what I may actually say to them when I see them on the 14th. Believe me, I have thought of some real smart ass remarks to make. Ughhh!!!! This is exactaly why I get so irritated with doctors and what not. I thought with this new health care reform we were suppose to be transitioning over to "patient centered care", well this doesn't seem to be the case with Elizabeth's doctors.
Last week I had parent teacher conferences with Elizabeth's teacher. She pretty much told me what I already knew. Elizabeth is doing okay in school, not great and not horrible, just ok. She says E relly has a hard time concentrating and focusing, but that they are now using the head phones to block out noises while E works on stuff to see if that helps to keep her focused. She is also having a difficult time with understanding rhyming words. Instead of picking out a word that sounds like the other she picks out a word that begins the same. So if you asked her what ryhmed with "cat", she may say "car" instead of "hat" because "car" and "cat" both begin with the letter c. She has been working on this all year long.
Her teacher said that she will be in her class again next year as it is a loop k-1 class for children with "physical or other health impairments". This year she just last month started going over to the gen ed k class an hour a day to try to mainstream. The hope is that next year they will be able to start at the beginning of the year going over to the gen ed 1st grade class and increasingly work up so she is over there the whole day and only getting help in the pohi room with certain things she is struggling with. I fear this won't happen next year, probably more like 2nd or 3rd grade. Which this is a hige bummer to me. I know I mentioned before on my bllog that I really thought E would be mainstreamed in k. I may also have to look seriously at medicating her for her ADHD and Disruptive Behavior Disorder as much as I really don't want to. It may be the only way to help her succeed and I am struggling with this decision more than any of you will ever understand or know. It def isn't a decision I can make or want to make over night. I am really fighting medicating her. She has already been on so many medications that we don't know what the long term effects will be. It is so hard having a medically fragile child that you have to make life altering decisions for on your own with no help. It is stressful!!
I do want to share something that upset Elizabeth yesterday at school. Apparently at gym class the kids were suppose to do crab walks, you know on your back with your hands on the floor going backwards. Well E couldn't do it well or as fast as some of the other kids (she has gym with gen ed kindergarteners and 1st graders) and it really upset her. What she doesn't realize and I can't make her understand is that most of those kids rolled over at 5 months, crawled at 8 months, walked at 11 or 12 months, rode a bike at 3 or 4 years old, etc... She didn't roll over until she was 16 months, crawl until 18 months, walk until 21 months, ride a bike at 5 years. You get my drift. Plus when she was 2.5 years old we put her in a medically induced coma to reapir her airway and kept her in it for 3 weeks to allow things to heal. In that 3 weeks she lost all muscle tone she had and had to start from square 1 learning to crawl and walk all over again. When I brought her home after her trach came out, it was like bringing home a 20 lb baby.
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