What I have yet to understand, is how Alex's experiences are going to fulfill those "words of wisdom" in his life. What is a little boy who has struggled so much, worked so hard, and has yet to break the barriers of his body suppossed to learn by life's obstacles at the age of 3? I guess that is where the "time will tell" piece of wisdom is suppossed to come in. Maybe we will all look back on this and think: Wow, we really had a scare on our hands, or we will look back and think of all the what ifs, what could be, and back to the ultimate question: Why? I think either way, we are blessed beyond words to have this amazing kid who has touch so many people's lives and hearts. He warms your soul, he brightens your mood, he makes you want to cheer, pray, and smile! He is the whole package even though he doesn't seem to fit that average, normal term of complete!
Now there is no pitty party here for our family! We are just starting to come to terms with the fact that we could have a miracle on our hands and all could be "perfect" for Alex. Maybe all those preemie, twin, boy, diet, etc. things could really be the reason and we could see a change when he is 5 or 6 or whenever, but we understand that we might not solve our "Alex" mystery ever.
So here is where this philosophical babble comes from: We had a few appointments this week that were suggested by our Neurosurgeon. The ones I mentioned last blog. We started with the genetisist at Cook's and we found some interesting things out. Let me start by saying that Matt thought she was a "B." I think he just thought that because she took a picture of Alex for their records and she mentionted that Alex and mom looked so cute, but didn't mention dad who was in the picture as well. What can I say, we looked pretty darn adorable that day! But, she was a bit crass, a bit snippity, and a whole lot angry that she was home from her trip to Northern New Mexico.
Any who, she started out by telling us that she thinks his "problem" is genetic. She thinks that if he doesn't test positive for a few tests, than he would probably still fit in the category. I don't think I am comfortable with this though. If you don't test positive, why throw a label on it and call it a day? So here is what she thinks:
She tested for Angelman's again. If you are unfamiliar with this go back to my first blog in July 2010. She thinks he has the facial features of a kid with Angelman's syndrom. This is technically what Dr. Marks (our neurogologist, not neurosurgeon) told us the first time we saw him. He did a Mircroarray test (DNA test) on him a few years back. That's the one that we had to wait 6, excruciating weeks for, and it came back negative. However, the geneticist says that the Microarray test is not the best test for detecting Angelman's. So we did another one that could give us a better understanding of his genes. Here is a link to the Angelman's website, which I think has a whole lot of non-mportant information for a person who wants learn basics about the syndrom. Either way you can look at the kids and tell me if you see a similarity between the kids's facial features and Alex's features: http://www.angelman.org/
Here is a better site for information: http://ghr.nlm.nih.gov/condition/angelman-syndrome
What I would see with this disease that fits Alex are these symptoms: developmental delay (which is like EVERY disorder ever), severe speech delay, balance issues, light hair, light eyes, and smiling (heaven forbid). He actually has a big head for his size (so that is one we can skip). He has a bit of spianl curve that the orthepedic is following, and his sleep is awful lately (but that could because of our sinuses that we were just prescribed Nasonex for). He doesn't fit the siezure or hand flapping thing, but he is pretty close with everything else.
Basically, Alex has the sensitivity to light, sounds, lacks attention, has a long face, and has large feet. His receptive language is great while his expressive language lacks. The kids on the site have a similar look to Alex, but I think that all these kids look fairly normal too.
So this leads me to the "who do you trust, what do you believe, where do you go from here" segment of my blog":
I have one doc telling me it is CP, one doc telling me it is Angleman's or Fragile X, one guy telling me to wait and see. So who do you believe? I guess, go with your gut. Become knowledgable, fight to see doctors, change doctors, and challenge doctors. Get second opinions, find other avenues, change your course of action, and know that in your heart of hearts that you are the most knowledge about your kid...more so than any doctor, professional, or therapist. There is no way that someone who has met and interacted with my kids for 30 minutes can honestly decipher his life's problem, his treatment, and his future.
Note for all you parents out there: Don't just go with the first person's opinion of your kid. Seek out different opinions and listen before "labeling" your kid.
So this leads us to another month of waiting. What will these tests bring? A label? A, lump your kid into the label even if he doesn't test positive for the label, or a big old question mark over the whole mystery? I am going to go with the latter. We don't know! Alex could defy all odds, Alex could just be truly delayed, or Alex could have life problems.
All I know is that he is my little boy, he is my twin's, twin, and he is Alex. He is what he is and that is pretty damn special! So get to know him, don't be afraid to play with him, don't treat him with kid-gloves, and above all don't discredit his affection for you. He wants to be held, loved, played with, and nurtured. He might not come up to you and initiate the play, but if you think about it...a lot of kids need some warming up. He just does things in his own way. Get to know that and you will be his friend!
I will update you on the results of his test when I get them, and the plan of action once I figure it out!
I didn't update on Elle last time, so I wanted to throw a bone her way. Elle is one sassy pants if I have ever seen one. She is potty trained (thank you God!). She rules the roost. She is dramatic. She is sassy, and she makes me laugh every day. She is super fixated on the fact that mommy and Elle are "happy." She wants us all to be "happy!" She loves school, she loves her friends. On that note, we are all her friends, but G-daddy is her "best friend." She thinks Tia is having a little boy named Joey (that would be Tripp, Elle, but she won't sway from Joey). She thinks we all having babies including herself and DADDY! She has learned to do that coy smile that gets you anything you want (see her picture in this post). News flash Elle, I mastered that smile...doesn't work on mommy. Try it on your dad! She can throw better than a girl, kick an ball with accuracy, is sturdy as an ox, and competitive. I have one live-wire on my hands, and I love it!
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