Friday, April 11, 2008

Doctor visits...

...seem to be the theme to my life. Joel and I both had appointments this past week. We both got good news. My heart is fine. It is good structurally and in good condition for my age. I do have SVT (Supraventricular tachycardia). It can be caused by caffeine, but since I cut that out about a month ago and am still having the irregular heart beats it is most likely caused by "emotional stress". Imagine that. Stress. For those of you who have just recently started reading this blog and haven't seen my other blog, I have had more than my fair share of stress in the last 2+ years. Joel was diagnosed with Tuberous Sclerosis at nine weeks old just over two years ago (November 2005), had seizures non-stop until doctors removed almost a quarter of his brain in December 2006. In October 2007 wildfires raced through southern California destroying both my parents and my grandparents homes (my parents are still living in a trailer in our church parking lot). Mix with that Isaac being out of work a lot (the last several years haven't been great but 2007 was our all time low since starting in the construction trade and owning our home) and many medical bills over the last couple years. Also mix in weekly doctor visits, therapy, therapy, and more therapy for Joel and add the fact that I am home schooling the boys (there...I said it...I'm outed...and this is likely the last time I'll say it for our safety). See what I mean when I say STRESS! So the prescription for my heart is to take daily walks of 30 minutes to try to alleviate some of the stress. (The problem is that trying to come up with the time to walk is adding stress.) Oh well, at least nothing major is wrong! :) Joel had a renal (kidney) ultrasound a week ago. He saw the neurologist on Tuesday who told us the results of the ultrasound were normal! And, I don't remember if I told you that all the blood work came back normal! So everything is looking good for his kidneys. :) Yeah! Only problem is that the blood in his diaper for a week is still an unsolved mystery. The neurologist did say that small kidney stones wouldn't show up in an ultrasound and it is a side-effect of the anti-seizure med he is on (Zonegran). (To explain the blood, I am thinking that maybe he passed a small kidney stone.?) He suggested doing a CT Scan of Joel's kidneys but that would require anesthesia. After discussing it and noting that there is nothing to do but take him off the medication (which we are trying to do anyway) if we were to find small kidney stones, and since he hasn't had blood in his diaper for almost two weeks, we decided that IF we see any more blood at all we will go ahead and do the CT Scan, otherwise we will leave well enough alone. Other than his kidneys, our visit with the neurologist wasn't too encouraging. I think Joel has been having great improvement in the development area. But, as soon as that was out of my mouth, the neurologist started asking me questions like "Can he talk in sentences?", "Well, can he talk in phrases?" (the answer to both of these is "no"), "How many words does he have?". When I answered with " about 4 or 5" I got raised eyebrows from him. Other questions about his development went about the same as this. Here's the thing, it's not about what he can't do...it's about what he can do. He can walk, run, climb, kiss, smile, say "Dada", "pu" for up, "out sss" for outside, and "ma" for more (only sometimes when he really, really wants something). He is imitating and he laughs when other people laugh at him (I have been informed that this is showing a sense of humor which is a stage of development). He can put the stars on his stacker toy and he can drop the coins into his toy piggy bank (finding the slots is hard work). He can even do an easy shape sorter although we are still working on this one. He is now playing with me when before he would only play with a toy if he was alone in the room. He seeks me out to play with him, help him, and just give him attention. He communicates with me in whatever way he can (mostly in body language). For a child who we are wondering if he has autism these things are huge. (And largely in part to a type of therapy called Floor Time. I am a huge advocate of Floor Time. I will post more later explaining what it is.) But the neurologist didn't seem to see all these things as the greatest progress. He asked if he has had the evaluation for autism yet, which he hasn't. It is scheduled for the end of May. It was discouraging to be discussing autism instead of all the great progress he has made. I decided that in the end he is the same child that I went in there with and autism or not, he is making great progress. I am sorry that it has taken me so long to make this post...I know that you all were waiting to find out the test results. It took me quite a while to process the results of this week and I was trying to cut down on my stress (since it was a rather stressful, busy week...tax season just makes things worse) by completely avoiding the computer. I think this is the first time I didn't even turn on the computer for three straight days since we bought it. It is good to be back though and thank you for sticking with me. Annie

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