The Late Bloomer (you got to read it all to figure out this title)

Today, I was talking to my students about our novel study, A Wrinkle in Time. We were discussing how a young, five-year-old in the story was considered a "moron" because of his lack of speech and appropriate development compared to other children when, in fact, the young man was a brilliant mind. Each time I talk about this story, I wish and I hope that Alex will be like the young boy in the story who shows all his nay-sayers that there is a possibility to defy all odds.

Today we've made a small victory! During this class discussion, I was left a voicemail to call the genetics clinic for our test results. The voicemail left me shaken because, of course, they don't leave test results in a message. Seriously though, who would really be upset if they left a message saying "hey, your tests are negative/positive, give us a call!" Really, does it have to be all melodramatic?

The nurse says, "Give us a call Mrs. Hunt about the test results for Alex. We have some things we would like to discuss with you." Yikes, really that seems bad! I called back during my conference with a dread and worry in my mind. This was it. That final straw to state whether Alex really does have a condition that we can not turn back from or if we were still on the path of possibilities. After what seemed like an eternity of her telling me the tests that were ran and the possibilites of outcomes, she dropped the "bomb." (Thought I'd add some melodrama to this moment to honor the sweet lady who made my day).

Alex is clear of genetic birth defects. All tests came back negetive, and Matt and I are clear of the possibilites that another child in our family could possibly be affected by a defective gene that one of us may carry. Such a fear!

Threw that one in on you didn't I. We think about our precious Alex and his possibility of a genetic defect, but we were startled with the reality that if we had more children their possibility of having Fragile X or Angleman's would be more than 23%. It is a relief that Alex is clear of this possibility once and for all, but also a weight of our shoulders that we are not putting another child in jeopordy if we choose to add on to our clan.

So here is the lastes: Listen up!

I am sort of, pretty sure, almost positive that Alex has said "HI" 4 times in the past week. Yes, seriously! It is far and few between, so I don't want to count it as his offical word. However, I do want to put it in record that Alex has a different sound coming from his mouth and he is trying to vocalize more! Yet, I am positive he has said "hi!" He is pointing to pictures on command, doing activites at school with purpose, and he is doing all of these things with attention and interest. Alex has a very, hyper active personality. Calming him down and controlling his senses is important. They are doing this at school! They are amazing. I am so happy with where he is at. It is, by far, the best place for any special needs kid. He is so lucky to be in this setting to learn, grow, and be nutured.

He has had a problem with waking up, completely ready to go, energized beyond words at 3 AM. It is a problem, but was solved by dad the other day by putting a baby gate up in their room. He woke up at 2:30 and was up for about an hour. I was not going to go get him, but rather hopeful that he would put himself back to bed. He did, but it was with his sissy. Talk about a wonderful moment waking up to your kids sleeping huddled together in the same bed. I love moments like these!

Last thing for this blog: We have been beyond blessed to have found CLC for Alex and Elle. When the kids were one; their nanny was ready to move on to other things, and we were left with finding a place for the kids. She was wonderful for them for the first year, but we needed to move on. I was worried and frantic because school had already started and I was unsure of where my kids would be taken care of in the best possible setting. Little did I know that God was going to lead me to a little slice of heaven on Earth. If any of my CLC teachers read this, please share it with the entire faculty. We are forever in your debt. You are our angels, answers to our prayers, and more than any "teacher' could possibly be (and that's coming from a teacher). We are blessed beyond words to be part of your program. Let me give you a small example of their love. Elle's teacher, Mrs. Norma, was talking to me the other day. I mentioned something about Alex (She is not Alex's teacher). She told me that God has a plan. Just trust it. She told me that I had to trust in him, and it will work out! She then gave me this book to take home and read to the twins. I'm going to pull at your heart strings, but I feel that I could not put Alex and my hopes, thoughts, and prayers into better words. If you have time, please listen to this sweet little girl read this quite simple book:

http://www.teachertube.com/viewVideo.php?video_id=129939

Thank you for all the comments, emails, and phone calls. You are what make us believe and hope, and Alex and Elle are what make us strive forward. These twins are amazing!

A mom's quest for answers....

I think we are all aware that life hands us obstacles, twists, and turns that change us, make us, break us, and mend us. Many of us have yet to understand the why or how, but in my mind I know that there is a greater purpose, mission, or reason for our struggles and experiences: good or bad!

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.

The other thing that Alex is being tested for is Fragile X. This one scares me a bit because of the little nuances that are right on the money. Of course this starts with every scary side-effect that is imaginable for most problems that someone could face, but it gets a bit more specific. So here is the site to navigate for this issue (if you got time).http://www.fraxa.org/default.aspx?gclid=CIWVhfj-jqsCFdwg2godcml1xg

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!

Here is my kids, mostly Alex, in a nutshell. A really, really, big nutshell! Can someone help me crack the code?