I finally had the long-awaited appointment with Dr. Bock on Monday. It was a sort of fiasco in the beginning as the good doctor was over an hour and a half late calling me. My appointment was for 3:20. I phoned the office at 3:45 to make sure everything was okay. I could understand him running a little bit late. Ten minutes later, his nurse calls to go over medications. She spends 3 nanoseconds with me and says "Doctor will call when he is ready."
By 4:37, I am now quite angry. I had my mother-in-law over trying to keep Liberty occupied who was becoming more and more upset that he could not be in the room with mommy where I patiently sat by the phone with all of my questions waiting...and waiting...and waiting. I pick up the phone at 4:39 and apparently, while I am calling them, the nurse calls me and the call goes straight to my voice mail. She swares she left me the after hours number (apparently his office closes promptly at 4:45). Picture me frantically calling the office number, getting the recording that means they have all gone home, and leaving messages. At this point, all I could feel was desperation. I realized at some point while I was calling the office and leaving messages, she called again and left another message with the after hours number on it. (I think she covered her butt at that point). Finally, I check messages again and there it is, the correct after hours number no one had thought to give me from the beginning. So, it is now almost 5:00 pm. I call up there and get through to the nurse. She is extremely curt with me and tells me that"...well....it will just be a quick appointment." I hit the ceiling. "Not for $400, it won't be! Put me through to Dr. Bock immediately!" I just snapped like a dry twig.
Dr. Bock gets on the phone and, though he is not nasty with me, begins telling me how he has been waiting. I interrupted him and said, "No, Dr. Bock, I have been waiting for you for almost two hours." He begins to patronize me, saying what an important follow-up visit this is. I was practically in tears. (Picture Liberty now bursting into the room, mad at grandma for keeping him away from mommy so long, stark naked, having ripped all of his clothes off, hungry, and climbing on me). I said, "Dr. Bock, I am not going to be portrayed as some slacker. I am well aware of how important this appointment is. I've been waiting for two months to talk to you, and patiently waiting by the phone. I have phoned your office at least eight times," and on it went. Finally, he said, "Well...let's do this thing, but we have to be focused." I told him thanks and we had our appointment.
(I could tell you more about the telephone crackling and my fear that the battery was going to start going dead...beep....beep...beep).......
We ended the visit on an upbeat note and he was very cordial. The next day, I called the office to make a follow-up visit for 4-6 weeks. This is what the doctor prescribed for us. The receptionist informed me that there is "no way in hell anyone can get a 4-6 follow-up appointment anymore." She said she did not want to talk badly about the doctor BUT he just doesn't understand how slammed they are. I asked her if this was due to the book and tv appearances and she said yes. His entire staff is so stressed out, that, if the doctor was not as good as I think he is, I would be changing offices. But, I do still like him and I do need his expertise for my little boy. I will have to buck up against his office staff and get through it.
As far as the results of the tests, I should have been jumping for joy, but the fiasco of the whole visit eclipsed my good mood. I did find out that Liberty does not have to go on yeast-free diet! Thank God. In fact, his labs looked pretty good. He was low in a few things like iron and Vitamin A, and we have ordered some new supplements to help in those areas. I am still keeping him on a gluten free and mainly casein free diet, although I have reintroduced a good yogurt and so far, so good. I think he went through a yeast die-off when we began the diet five months ago. Had I gotten labs done before we started anything, we more than likely would have seen something different. No pediatrician around here would even understand what I was talking about if I asked for labs. They barely understand the gluten free diet.
We are supposed to get a urine porphyrins test from the lab in France. I have not checked that out yet and am wondering how much it costs. This has to be done before we order the chelating agents for heavy metal detoxification which is the direction in which we are headed.
The bottom line of the conversation with Dr. Bock is that Liberty is on a good road, that we are indeed pointed in the right direction. The MB-12 shots are helping tremendously. When I looked back over the meticulous notes I have kept since beginning the shots, I can see immediate effects. He said four words in speech therapy a few days after the first shot. His eye contact is immensely better, he is more easily engagable, he SLEEPS THROUGH THE NIGHT PEOPLE! This mom did not get any uninterrupted sleep for a good solid 3 years. THREE YEARS. This is also partly due to the diet, I'm sure. He is eliminating so much better, eating better. (The oral stimming is a bit less, but sometimes he still licks the car or a doorknob. Yuck). I even get long notes home from the kindergarten teacher about all of the new things he is doing.
So, today, I am sitting in a place of gratitude. You all know the road, you've been there or are still on it. It has gotten better and looks like it will continue to get better. There's been a lot to do and we are exhausted but now we are getting just a little measure of distance where we can relax at least a bit more.
My boy just turned five a few months ago, and, if you stand him next to a neurotypical 5 year old boy, the most glaring diference is that he is not talking or not talking normally, rather. He now says patterns of sounds and a word or two will pop out now and then.
Just recently, I went to Barnes and Noble. I should know better not to take myself to places right now where there is the potential to scare myself and get down about Liberty's progress. There were two little boys playing in the kid section around the Thomas the Train set. Liberty went over and grabbed a train to play with. At first he ran it around the track. Eventually, he wanted to be near the boys and the big pile of trains that they were playing with. There was a point where he went over to them smiling, uttered his gibberish, and tried go join in. The other boys stood back and looked at my angel of a son with looks that said, "What are you?" It just crushed me inside. I hurried out of the store before I plummeted any further. I just couldn't handle it.
I told Dr. Bock about how I thought Liberty was beginning to progress through his milestones, picking up where he left off at 13 months after the MMR. In fact, he is doing many age-appropriate things. The language delay is the most severe thing we have going now. One of my sisters told me that she thought he is in the beginning stages of language. He has said different words at school and is even picking up signs as well as picture cards. (And I am so grateful for a wonderful teacher and experienced teaching assistants and only 4 kids including Lib in the entire class. They do a lot of inclusive teaching, too). He is a very even-tempered, sweet child, but the frustration of not being able to communicate all of his needs is growing.
Dr. Bock told me that I should not expect him to immediately start talking in full sentences after a couple of months of MB12 shots (you know the stuff you read and the videos you watch). He told me to avoid comparing him to any neurotypical kid and stop torturing myself. His final sentence to me as we got off the phone was, "We're in a very good place, he's made great progress, and let's continue to heal this little guy."
I am now only thinking about my son's well-being and those thoughts and actions that increase well-being. I search for thoughts that bring relief. When I have found them, that is what I focus on. Obviously, going to Barnes and Noble at this point in time is not something that brings relief!
Getting into the new habit of consistently reaching for thoughts that provide relief allows well-being to flow. This is what I want the most for me and my son: To stay in our well-being, in that good feeling place. There is no fire that has to be put out today. No emergency, just a steady pace of putting one foot in front of the other and enjoying each day we have together.
I finally called the office back this morning and told the woman at the front desk that I would like to go ahead and make another appointment 6 to 8 weeks from the next one in December. I was suprised I got an appointment. It's for 7 PM on a Tuesday night. (She told me there are no morning appointments from now until eternity) I asked her if she thought he'd be two hours late on this one. She said it's possible.
Hey, maybe 9 PM is the best time to have an appointment. It will certainly be quiet in the house and I won't have to get a babysitter.
"Normal" at Our House
