Sunday, September 26, 2010

For those with patience!

I cannot BELIEVE it has been so long since I have posted. I have been carrying around a lot of guilt about this...honestly, the summer has gone by like a blur! It was filled with beach days with Nana, BBQ's, a great vacation to Point Sebago....I have thought about posting at least every other day....and lately its gotten to the point where I wasn't sure where I'd begin BUT I'll give it my best shot!!!

"Baby Anthony" is so not such a baby anymore. Just looking at him he is such a little boy now! He got his first haircut in July. I was apprehensive about getting rid of the curls but I couldn't hold big Anthony back anymore! He didn't mind it so much (although he HATED the second haircut a few weeks ago.) He looked soooo handsome and grown up...Daddy and I shed a few proud tears of joy.

If any of you have seen recent pics of Anthony on Facebook, you may have noticed that he is "sans" glasses in most of them. No, this is not because he doesn't need them anymore....rather in true toddler fashion, they don't last more that a minute before he pulls them off and tosses them aside. I am thrilled to report, however, that at his eye exam 2 weeks ago his vision was in the normal range for a child his age!!!! HOORAY! He still needs his glasses because his eyes turn in (both of them at different times), so I am hoping (but VERY skeptical) that the new adjusted prescription might be more comfortable and he MIGHT keep them on.

One of the most frequent questions Anthony Sr. and I get from family and friends is whether or not we have received an official diagnosis for Anthony's condition. Back in July we met with Anthony's geneticist and we discovered that Anthony does have a variant in one of his genes. They do not know for sure if this is what has caused Anthony's issues but they are suspicious. In order to confirm the theory, they needed to do a series of other tests, including testing myself and Anthony Sr's genes for the same variant (to see if we are both carriers.) After what felt like forever, the Dr informed me last week that I DO NOT have the variant, which surprised him. We are waiting for Anthony Sr's results. What does all of this mean? Well, it's hard to say. The disorder that they are suspicious of is extremely rare and has never displayed symptoms in a child so young (the youngest anyone has shown symptoms was 8-10) is basically a disorder that occurs in early onset adulthood! Sooooo...its so rare that even if they confirm that it was what Anthony has, they wouldn't be able to give us much information or prognosis. At this point, I have no idea if they are close to finding a cause for Anthony's challenges...which honestly doesn't really bother me. He continues to make progress...and most importantly...HE'S HAPPY!!!!!! The truth one has a crystal ball, so we cherish every moment, take things as they come, and feel truly fortunate that we have this amazing little boy that has and continues to bring us abundant blessings!! We have an "ATTITUDE OF GRATITUDE"!!!!

Anthony continues to receive many therapies every week. He has two physical therapists, an occupational therapist, a development specialist, a vision teacher (who also performs cranial sacral therapy weekly), and a speech therapist. He works very hard but also has a lot of fun! All of his therapist marvel at what a social and aware boy he is. Despite his physical limitations, he has a wonderful ability to connect with people...especially with his contagious smile and infectious giggle!

He continues to make awesome progress in his physical therapy sessions. He now rolls over with ease...we sometimes wonder how he can make it across a room so quickly! He is also working very hard at what I think is best described as a "worm crawl". He gets his knees up sometimes and pushes forward, but often gets his arms stuck underneath him. Boy though, does he have DETERMINATION!! He keeps trying and this mama knows that HE WILL GET THERE! Last week his outpatient PT got a "Mini-Pacer" for him to use. Picture a very high-tech walker on wheels that supports his upper body. Right now he is learning the he can move while upright. Next will be showing him that he can incorporate his ability to step reciprocally...and then my boy will be WALKIN"!!!

His speech therapist has been working hard developing a "total communication" program for Anthony, using a combination of pictures for choice-making, some adapted sign-language, and switches to activate toys and "talk" or read stories. Anthony has been consonant babbling (ma, ma, ma, ba, ba, da, da) for a few months. I am confident that he will be verbal (to what extent, I have no idea) but it is THRILLING beyond explanation to see him communicating in these other ways.

Anthony had another phenomenal appointment at the Augmentative Communication Clinic where he successfully used switches to activate toys, LEARNED TO CLAP!!, and used an incredible adapted computer program. We are currently in the process of trying to obtain a variety of unbelievable adaptive communication equipment for Anthony's personal use. His amazing speech pathologist at Children's Hospital actually got choked up during this session....saying "this is what makes me LOVE my job!" It was amazing to see!!

Anthony also started playgroup two weeks ago! He goes into a classroom (set up like preschool) for 2 hours each week with his OT as his one-on-one aid. I sit in the parent room with other mom's. He seems to like it so far...I've been told that he has been a quiet observer. I am excited about this new step for him!

In other very important Micalizzi news...Anthony's proud big sister started preschool at the Cole School in Boxford this month!! Gianna is loving independent and confident. On the first day, we drove her to school and she said "mom, your not going to come in today, right?" All smiles and no tears for her. As we drove away from the building I had my a few tears strolled down my face Anthony Sr asked why I was crying. I told him that yes, couldn't believe that our baby was off to school, but more-so that I was so proud of the well-adjusted little girl she is! She goes to school 3 afternoons a week (Anthony Jr. naps for an hour after I drop her off, so Mommy is able to get a bit done around the house!) On Thursday "Silly Nana" drops her off and picks her up as Anthony Jr has a full schedule. Each day after school I get a report (sometimes tough to retrieve!) on what her job was, what she ate for snack, and info on the letter of the week, among other important preschool happenings. Gianna also started dance at a new school this year (Just Dance)...every Saturday she does an hour and 15 minutes of ballet, tap, and acro dance (tumbling, jazz etc.) For those of you who know her, you know this is right up her alley...she is quite the little performer and has a bit of an affection for the spotlight! She is a joy and a great motivator and cheerleader for her brother!

SOOOOO...that's all for now. I am sure I have forgotten plenty, but I am thankful for those of you that have read this far. I hope to post more regularly...especially now that I have a new LAPTOP (thanks honey!!)

Thank you all for you continued support and prayers!!!