New AFO's mean special shoes...

Anthony was fitted for new AFO's a couple of weeks ago and he got them yesterday. For those of you who don't know, AFO stands for Ankle/Foot Orthotic...just a fancy term for the braces Anthony wears. He got his first pair of AFO's when he was 11 months old, a year ago in December. The new pair is much bulkier and has straps not only on the top (at about mid-calf) but also at the ankle. Since these AFO's are bigger, Anthony also needed new sneakers. With the old braces, we were able to buy him wide Nike's and he's worn the same pair ever since. We got them for the bargain price of $16 (thank you Modell's!) So tonight we headed out to search for new kicks. The orthotist told me that New Balance was probably the best brand because they make extra-wide's. Well...we went, we tried, we bought...but the experience was crummy!! Don't get me wrong, the girl who helped us was very nice. We were able to get the shoe on (with a bit of annoying effort) and tie it...but it kinda looked awful. I felt deflated...I just wanted to go and buy my kid a pair of cute sneakers. Then I remembered that my wonderful friend who also has a kiddo with an AFO just bought her daughter a pair of specialty sneakers (called Hatchbacks) and loves them! They are really cute too and super easy to put on! I just ordered a pair and will return the New Balance sneakers. It just made me realize how lucky we are to have a wonderful support network of friends...and that we have these great things available to use that some of the "pioneers" probably didn't. And as a side note...Gianna got a snazzy new pair of shoes from tonight's shopping experience...All's well that ends well!!

http://www.hatchbacksfootwear.com/products/freestylebrownb.htm?-session=CartID:183EB4FD18e162F40AJgV361CDEF

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.

GLASSES:
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.

DIAGNOSIS:
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)...it 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 is...no 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"!!!!

THERAPIES:
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 it...so 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 moment...as 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!!!

Communication

Last week Anthony was seen at the Augmentative Communication Clinic at Children's Hospital. We had the pleasure of meeting with Alycia Berg, Speech Pathologist.
I really wish that I had brought along our video camera to capture this amazing appointment, I am afraid my words here won't do it justice. Basically this clinic will help form a communication program for Anthony using a combination of picture boards, voice switches, adapted toys that he can easily activate, and computer programs, among other things.

link: http://www.childrenshospital.org/clinicalservices/Site2016/mainpageS2016P0.html

Anthony did such an amazing job at this appointment that it brought tears to my eyes. He was engaged in activity and played with the therapist for an hour and twenty minutes. I watched as he made choices by reaching out to one of two pictures, touched a button to ask for something to be repeated, to play music on a tape player, and to activate songs on the computer, played peek-a-boo using vocalizations...I watched speechless with joy!!

We will now be visiting this clinic every three months, adding speech therapy weekly to our Early Intervention team, and using a number of communication tools.

At the end of the session Alysia said that sessions like these are why she loves what she does...

It doesn't get much better than that!!!! I love my little guy and I am so excited to start this new adventure with him!!!!

P.S...Speaking of communication, Anthony can now touch his nose when asked, give high fives, respond vocally to "hi", and just started to refer to his sister as gggggee...LIFE IS GOOD!!!

Doctor's Visits

I've been itching to post forever and just haven't made the time. Now I'm faced with where to begin!! I meant to write after Anthony's CRAZY week of appointments (count them...6! and that's not including EI and PT visits.) Here are the docs he saw and the results:

*Pediatrician: Anthony visited the doctor for the third time in 3 weeks! At the first visit he was diagnosed with double ear infections and was put on ammoxicillan...5 days later he broke out into the hives (though so did his sister?) so they took him off the ammox. Five days later the ear infections came back...they put him on a three day antibiotic. It seemed to work but Sunday morning he seemed fussy, had a low grade temp, so back to the pediatrician we went...double ear infection! They put him on a third antibiotic, checked him on Thursday, and (knock on wood) he's been infection free for two weeks. PHEW!

*Nutritionist and GI Doc: Anthony's weight is up and he's back on his curve! At 20 lbs 9 oz he is also on the charts for the first time (3rd percentile!!) GO ANTHONY! The nutritionist said we could now use Carnation Instant Breakfast interchangeably with Pediasure to save on cost. I've been jumping through hoops to try to get the Pediasure covered but no luck yet. The GI doc is keeping him on the Prevacid for now and is feeling pretty good about the course Anthony is on...Have I mentioned that both of these people are AMAZING and I always feel so at ease in their appointments? I always feel like I've been to therapy after I leave Jan the nutritionist and ALWAYS get a good laugh or three with Dr. Walker!

*Augmentative Communication Clinic: see next post...just TOO great to not get its on post!!

*Orthopedist: Doc was so pleased with how much looser Anthony's arms and hands have gotten since the last visit 6 months ago. He also found nothing concerning on the exam so he didn't need to do a hip x-ray as previously thought. Anthony's muscle issues and decreased mobility make him prone to hip dysplaysia, so they will be watching for that. Dr.Matheney also wants Anthony to get a Benik vest...picture tight vest made of wet suit material...this will give him extra trunk support. He will get it at the end of the summer (when the weather is hopefully cooler) and wear it about 50% of his awake time. I am excited about this and its potential to give Anthony more trunk support and stregthen his upper body...

Some days are just easier...

I've been contemplating for the past few hours whether or not to post something tonight, but I decided it would be a great way to flush my system.

I get the "how you do it" question a lot. Some days its easy for me to answer...I just do, I love my son, I see the blessings these challenges have brought, it could be so much more difficult...different days call for different answers.

If I'm being honest though...today was just "one of those days." I know we all have them, mom of a special needs child...any mom at all.

Mostly it was just one of those days because, in perfect 3-year-old fashion, Gianna was exerting her "first-born female" independence. Try as I may, nothing I tried made a bit of difference...her listening ears were left on her pillow when she got out of bed this morning.

So needless to say I wasn't in the best mood by late this afternoon. I had taken Gianna to dance class and Anthony came along as he always does. After class she had to use to bathroom and that's when it hit me. It's happened before but today it had more of a lasting impact than usual.

Since Gianna was wearing her leotard and tights, I had to go into the bathroom to help her. Her classmates and their moms had already left. I can't bring Anthony's chair to the studio because its down a big flight of stairs. Anthony can't sit up...

I had to ask a mom, who I don't know, to hold Anthony while I took Gianna to the bathroom. She was happy to do it, and really it was no big deal...but I haven't been able to shake the rush of thoughts that have consumed me all evening. He's 16 months old....long since grown out of his carrier...can't sit up, stand, walk...I NEEDED HELP...

I can totally see the silver lining here...being able to ask for help is a great thing...I'm sure I made that woman's day that she could make a difference (however small) in someone's day...Anthony was happy (as usual) and was smiling all the while...these are the thoughts I repeat to myself when I feel trapped in what my friend refered to as the "jail of negativity"...


You ask me how I do it...some days are just easier than others...

A beautiful piece I read on another blog...

We

My Beautiful Son!

So I'm sure I am not alone when I say that I carry around quite a bit of good, old fashioned mother's guilt. From the small stuff to the large, to the stuff that seems large but is actually small...the feelings are usually fleeting but are there none the less.

Today I am feeling especially guilty about one thing in particular and it has to do with this very blog. You see, in all my efforts to "get the word out" about Anthony's struggles and try to alleviate some of the mystery of our lives for the past year or so, I failed to do the most important thing. I failed to introduce you to my precious, beautiful son.

Anthony William Micalizzi Jr. is a vibrant, happy, charming little boy who captures the heart of all who meet him. He has a gigantic, contagious smile (which his neurologist once said you could "drive a truck through") and an infecitious giggle, especially when his big sister is the cause of such laughter. Lately I've noted that perhaps because one of our early concerns was that he wasn't smiling or laughing, he is making up for lost time...there's certainly no shortage of either now!! His bright blue eyes sparkle behind his long lashes and even his adorable little glasses cannot hide the kindness and wonder they hold.

He loves to be held, played with, and talked to...and isn't very happy when noone is paying attention to him. He is a good sport when Mommy and Daddy request that he show off his newer tricks..."where's Mommy? Daddy? Gianna? Nana?", "Give me a kiss!" (to which he responds with a kissing noise), "Where's the light?" (he looks up to find it.)

He is also very patient and hardworking when his therapists are working with him (although it is more like play than work!) For the last 4 months or so, he has also become very motivated to move around! He now rolls over both ways and is trying so hard to move around to get to toys he'd like to play with. The past couple of weeks he has been getting his knees under him while on his belly and I have even caught a quick glimse or two of him up on his elbows and knees at the same time. One of his doctors tells us if he has the motivation to move he will find a way. She said it might not look pretty but he will....To me it will look like the most beautiful thing on earth!!

In addition to his awesome belly laugh, his cooing and babbling fill my ears with happiness...even more now that oohs and aahhs have made way for yaas, daas, and baas (a very exciting time in his development!)

Anthony brings overflowing joy to our family each and every day. If you've never had the pleasure of meeting him, I can assure you he would brighten your day if you did. If you have, please feel free to leave a comment about this amazing little boy...my BEAUTIFUL SON!!!