Grammy reading to my little book worms.
I feel like I need to tell you that despite my last post (where I talked about behavioral issues) Joel is still an extremely sweet little boy. Most of the day is filled with kisses from him to me and shared smiles. The few temper tantrums he has in a day is completely offset by all the love flowing out of him. When he smiles he has the most wonderful dimples at the corners of his mouth. I love to kiss them. I love him with all my heart and more. I love him so much that I am always watching and evaluating him so that I may catch any issues immediately because in everything the sooner it is caught and treated, the better it is for him. My sweet baby boy.
...in so many ways, lately. He is doing several new things just since the last time I posted. On the good side he is saying more and more partial words. He now says "Dada", "Mama", "momo" for more, "outsss" for outside, "issss" for this (like when he wants something he'll say "issss"), "pu" for up, occasionally when eating he'll copy us with "mmm mmm mmm" or "ahhh", and he used to say "Bye-bye" but I haven't heard it in more than a month. It's the second time he's lost bye-bye. This is the interesting thing about Joel. I don't know why it happens and I haven't heard a good explanation from anybody I've asked, just some guesses. He has had several words that I have heard anywhere from one to one hundred times and they just disappear. I have no idea why. The speech part of his brain may have been removed when they did his brain surgery, but we don't know for sure. Just speculation. A couple weeks after his surgery Joel was saying "Dada" but speculation is that he was just experimenting with sounds. About three months after surgery Joel looked deep into my eyes with the most loving look and said "Mama". That was the first time I heard him say mama and it melted my heart with the look he gave me. I know he was calling ME mama. I know it because of the way he looked into my eyes when he said it. Joel doesn't look deep into our eyes often. In fact it almost never happens, so I know it was for me. But speculation says that he was probably just experimenting with sound since we didn't hear it again for 12 whole months. His surgery is now 16 months ago and he seems to be pretty much on track with a child about that age. But then how do you explain his words he said so soon after surgery? And why did he say "bye-bye" for more than a month with waiving and then just had it disappear for more than 3 months? I don't have any answers. Joel is very complex and this area is a mystery not only to us but also to his therapists and doctors.
Good things happening lately also include his using gestures to direct us to what he wants. If he wants a toy from his toy bookcase he comes and makes us pick him and up and then he uses his upper body to take us to the shelves he can not reach which hold his favorite toys. If he wants to swing (which he LOVES, by the way) he will come get me and take me to the swing and pull on me and protest with his voice (anywhere from whining to screaming, if I'm not fast enough) until I put him in it. I love that he is communicating with us what he wants.
What I don't love is the not so good things happening around here. Joel has started throwing temper tantrums. When he doesn't get exactly what he wants exactly when he wants he totally loses control. Deliberate screaming and uncontrollable crying is happening more and more. Often he gives me a look before he starts...the look that says you are not giving me what I want and I'm gonna let you have it because I'm mad. It's hard to figure out exactly what is going on. Is he just catching up developmentally and starting to act like a two-year-old? (We all know about the terrible twos.) Or, is he frustrated because his thinking is more advanced than his communication skills? Or could he have the start of behavioral problems? This last one is one of my biggest fears. Many different behavioral issues are linked to TSC (click here to read about it on the Tuberous Sclerosis Alliance website) including aggression, sudden rage, hyperactivity, attention deficit, acting out, obsessive-compulsive behavior, repetitive behaviors, staying in their “own world,” being nonverbal even at an age when most children are speaking, and other autistic behaviors. Please be in prayer with me that these temper tantrums are just typical two-year-old behavior and not a behavioral issue from the TSC. Also, please pray that my fears will be quieted and that God's peace will come over me as I deal with this newest behavior.
Thank you to everyone who is reading this blog. I have had Tuberous Sclerosis Awareness on my mind and heart lately and I am feeling led to focus more on this. I would like to help other families who are dealing with seizures and/or TSC, visual impairment, autism. If you know of any blogs dealing with these issues could you leave the address in the comments...I would like to put up links to other people dealing with these issues. Thank you.
PS I forgot to mention that Joel has become a book-worm. We moved the board books out of my older boys room and into Joel's room and he decided he was ready for them. He now follows me around the house with a book wanting me to sit and hold him and read to him. I LOVE IT! I was worried that he wouldn't develop a love for books (or even like them) like my other boys do. I believe that reading or even being able to sit and be read to is a key to education and I think this new interest will open new paths in his brain and help him learn in new, wonderful ways.
...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
Grammy reading to my little book worms.
I feel like I need to tell you that despite my last post (where I talked about behavioral issues) Joel is still an extremely sweet little boy. Most of the day is filled with kisses from him to me and shared smiles. The few temper tantrums he has in a day is completely offset by all the love flowing out of him. When he smiles he has the most wonderful dimples at the corners of his mouth. I love to kiss them. I love him with all my heart and more. I love him so much that I am always watching and evaluating him so that I may catch any issues immediately because in everything the sooner it is caught and treated, the better it is for him. My sweet baby boy.
