Thursday, July 12, 2012

To Anthony, With Love from your Mom!

Dear Little Buddy, You have been so strong over these past couple of weeks and I am so proud of you. All of your caring nurses have fallen in love with your sweet eyes, joyful smile and infectious giggle. Even though it has been hard on both of us to be away from Daddy, Gianna and Leo, as well as the comforts of home, I have loved being able to devote one-on-one time to you and your needs. I can't describe with words how it warms my heart that you have been constantly wanting to hold my hand or have me lay with you. We will have some time adjusting to having to share our attention again when we leave the hospital (but I know we are both so ready to go home!) In about 30 minutes time you will be going to the OR to have a procedure done that has been talked about for a couple of years now. You are going to have a feeding tube (called a PEG tube) placed in your stomach. You have always been under weight and your weight gain has been slow and difficult. You have always made such great and consistent progress and I am so proud of that (proud of you and me and Daddy as well!) The past couple of months you have been having a hard time eating enough and you often refuse much of anything at all. Since your seizures 2 weeks ago and the time we've spent in the hospital you have lost another 2 pounds, pounds you can't afford to lose. Also, at the beginning of the week you failed a swallow study that showed you are aspirating liquids, so you can only safety swallow puréed foods or thicker. You will likely be able to swallow liquids again, it will just take some time. You will still be able to eat by mouth, we will just be able to put any extra calories you need through the tube. I also have big plans for juicing and giving you all kinds of other healthy things you would have never let me give you before! And the part you'll probably like the best: You won't have to taste all those yucky medicines we have to give you anymore...they can all just go right in your tummy through the tube! This new journey we are embarking on will be such a positive for you. We will no longer need to worry that you are getting the nutrition you need or gaining the weight you should. We will be able to confidently stick to a dairy-free diet that has evidence to improve your syndrome. You will be stronger and healthier!! Mealtime wont be stressful, you can enjoy what you eat, and form a good and healthy relationship with food. It will be a bit of a lifestyle change for us all but like everything else, we will adapt and eventually thrive! We will do whatever it takes to do the right thing for and by you and together we can overcome anything.   I love you my sweet child. I'm so glad you're mine and I'm so proud to be your mom!

Thursday, April 12, 2012

I must be doing something right!

I think about writing on my blog literally EVERYDAY. There is always a topic to write about, sometimes it's something happy and exciting, other times tough or sad or controversial. I just can't seem to get it together enough to actually put it together. Sometimes I even write whole articles in my head. 

Yesterday I read an awesome article that basically called moms to forgive themselves for not living up to the ideals and pressures put forth on us in this very driven and PUBLIC time we are living in. So today I am forgiving myself for not writing in the blog that people are always asking me about. I asked you to read it, and I don't always deliver. I am going to TRY to find the time, put in the effort, because I know in the end it is so good for me and I think some people are genuinely interested. And if I don't write, it's probably because I am trying to manage...the kiddos, the laundry, the driving, and most likely my own head! 

Since I last wrote amazing things have happened. In many houses it would be considered the small stuff...in ours it's HUGE stuff. Anthony moved to a big boy bed, where he has more room to move around and we can crawl in with him. It was a transition I pondered for so long. He didn't really understand it and it was rough the first couple of nights...the first night he wouldn't even look at it! But he adjusted well and I think he really likes it now! He actually woke up the other night and I went in and settled him. I thought he went back to sleep and about 30 minutes later we heard a loud bang. He had somehow rolled beyond the rails and fell out. He was on his head with his legs in the air resting against the bed. I was so scared that he had broken his neck! He has zero ability to brace or protect himself from a fall. He was shaken up but totally fine. I guess we will start thinking about a special needs bed soon.

Anthony is making fantastic strides. He is holding his own bottle and sippy cup (though still likes to get mom and dad to do it when he doesn't feel like it!) He is doing a great job working on walking in his pacer at school. They encourage him to walk to the slide or trampoline at school and he gets to use them as a reward when he does. Unfortunately he has grown too tall for his pacer at home. We are waiting for insurance to approve a new one. He wants to stand and move all the time so we are trying our best to give him those opportunities. He is also trying very hard to use his voice and make new sounds and word approximations. 

I won't tell you there haven't been challenges. He gets frustrated easier these days it seems, and can't always do what he'd like to be able to. There are seating problems, and feeding issues, and communication challenges. But we continue to focus on the positive because he truly continues to light up our life everyday. We are so proud of him and everyone who meets him falls in love. One of my favorite moments is watching his teachers wheel him from the car into school everyday. All the teachers from the entire building are out front greeting kids and taking them off vans and buses. Many stop and gush, place hands over hearts and tap each other to look as my son passes through. I tear up as I read "oohhhh he is soooo cute" off their lips. It's precious for me to witness and some confirmation that he is well loved at school. 

The other night Gianna and I were able to spend some quality mommy-and-me time together after the boys went to sleep. She curled up next to me on the couch and we chatted. She beamed and proudly exclaimed, "mom, someday when I grow up I hope I have a child with disabilities...because I'm really into Anthony and I really love him so much." I must be doing something right....

Tuesday, February 7, 2012

Preliminary Diagnosis

Feeling blue after the upsetting Patriots loss this past weekend? I have a real-life hero living under my roof that you can cheer on and I assure you he won’t disappoint! He doesn’t make a multi-million dollar salary but for as hard as he works with a smile always on his face, I assure you he deserves one.

Anthony made us overwhelmingly proud on Saturday when we decided to bring his Pacer to an indoor play place. We stood by in awe as he strolled over 30 steps at a time. He’s taken a few steps very slowly before but we’ve never seen anything like we saw this weekend. So I’ve decided it’s time to make some recent news we’ve received public (and hopefully cheer up you heartbroken Pats fans.)

On April 5th, 2011 we met Dr. Jim Filiano for the first time. I was recommended to him by the amazing Krauss family (a beautiful story for another day.) He is the most kind and gentle, yet equally brilliant man. He had a hunch but really didn’t explain it fully at the time. He started Anthony on a “treatment” based on that hunch and in the meantime ran a ton of tests to try to figure out a diagnosis for Anthony. We were intrigued by the idea of the possibility of treatment but didn’t focus much on it. I know that might sound strange, and someday when I write a book I can explain it better.

Since this could turn into a very long story, I’ll get to the point. When we went back to Dr.Filiano for a follow-up, a lumbar puncture was ordered to test his spinal fluid for the “hunch” he had been “treating” Anthony for. I was glad because I didn’t want to keep giving him yet another medicine everyday if it wasn’t necessary. On December 5, 2012 I was emailed the results of the lumbar puncture. Anthony tested positive for a Cerebral Folate Deficiency. Two days later we were in Dr.Filiano’s office at Dartmouth-Hitchcock, listening to him tell us that Anthony had a preliminary DIAGNOSIS after 3 years of unanswered questions. And the most amazing part....it could be TREATABLE. Since his levels of folate were still low at the time of testing, we immediately doubled the treatment medication which produces folate directly in the brain. Last week we doubled the medicine again.....and then came the walking.

We still are at the preliminary phase of diagnosis. Dr.Filiano is still unsure as to whether or not this diagnosis is primary or secondary to something else. Cerebral Folate Deficiency is extremely rare so we are still not sure what the treatment will do. But Anthony continues to amaze us as he always has. The bottom line is this...my son is my hero. He smiles more than anyone I know. He will light up a room when he enters it, whether he is being carried or he strolls in with his own two feet. His spirit will move you and I can’t wait to share with you his next big accomplishment...I hope you’ll agree, it will be just as exciting as any Superbowl!! video

Tuesday, January 3, 2012

Anthony's First Day of Preschool!!


Today was Anthony's first day of preschool and the start of a whole new journey for all of us. We prepared last night and all woke up early for the big day. Although hectic, it was kind of neat that we all worked together to make it out the door to drive the 35 minutes to the North Shore Education Consortium. We were greeted with all the excitement that new beginnings bring. Anthony's teacher took a family picture and had all the children in the class say hello to their new friend. Gianna spoke so kindly and nurturing to him as she wheeled him around. And before we knew it it was time to say goodbye. I knelt down and kissed him on the forehead and said, "have fun at school buddy! Can you say bye to me?" He turned his head away and wouldn't look at me! He knew something was very different and I could tell he didn't quite know what to make of it. So just like that we were out the door. In the lobby Gianna got teary and said "I'm going to miss him!"..my sentiments exactly! How precious coming from her! I shed a few tears myself when we got to the car. Our life for 2 and a half years has been full of Early Intervention therapies...5-6 per week. I have sat in on nearly all of them. And now, I will be dropping Anthony off for 5 hours a day, five days a week. Life certainly is going to change. It's funny how change often happens at the appropriate time. Anthony's been getting bored at home and I've been finding it more of a challenge to keep him entertained. He is so ready for this next step. I've felt the need for more therapies for awhile now, and he'll get that at school. While he's there I'll also have a chance to spend more less-divided time with Gianna (and Leo). All of it is very, very good. It's just so bittersweet. Babies grow up, needs change, and the role of motherhood evolves. I am thrilled to see my little guy thrive. When I picked Anthony up he was looking at a book with his teacher and his new friends were giving him toys to play with. He was so happy and engaged, he barely noticed my arrival. It's not always easy to let go (a little!) and maybe even harder when your child has special needs. But boy is it amazing to know that they are thriving, growing, learning and loved. Isn't that what truly matters most?