Saturday, September 17, 2011

Wave of Awareness

Our family is going to be WAlKing to support Hydrocephalus Awareness and Research. What exactly does that mean?? Well...
According to the Hydrocephalus Foundation:
"Hydrocephalus means there is an abnormal accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. This fluid builds up and causes the ventricals to enlarge and the pressure inside the head to increase. Hydrocephalus cannot be cured, but can be treated. The most common treatment is a surgical procedure to place a shunt inside the person's brain. The shunt channels the flow of fluid aways from the brain into another part of the body where it can be absorbed and transported ino the bloodstream. If left untreated it could result in permanent brain damage."

Hmmm, a lot to take in. Especially when I first heard the news that my son Luccio has Hydrocephalus. Luccio was born with a Neural Tube Defect (NTD) so essentially that meant that a part of his skull had a small opening causing fluid to build up into a small pocket that looked like a skin covered golf ball on the back of his head when he was born. We fondly called it his "Lumpy." Thankfully at 5 months old Lumpy was removed and his skull was repaired. But, closing up that area caused the fluid to build up and thus Luccio now has Hydrocephalus. So at 14 months old he was "shunted." His neurosurgeon had tried other less invasive pocedures first, but alas the shunt could not be avoided. So Lucci has a tube that is inserted in his ventricles around his brain and it drains fluid into his abdomen. Thus far, thank God its working very well!!

In the beginning it was very scary to me. Greg and I need to be able to be Luccio's advocates. But, it was so overwhelming. I felt like I am wasn't sure if I really knew enough about what i am doing. I think we have good plan in place for him, but is it aggressive enough? What does it mean for his future? For school? With friends? Sports? We are learning as we go. And we have met some wonderful people along they way.

We were going to a support group that helped a lot because we were able to talk with other parents in similar situations. But, in talking with them I realized more than ever that this is an ongoing process.

Hydrocephalus isn't going to go away. Luccio will have it and have to deal with it for the rest of his life. It makes me sad because I don't want him to think that there are limitations placed on him because of it or to struggle in anyway. I want to bubble wrap him and homeschool him so he won't have to deal with insensitive teachers or students! Not logical I know.

Right around Luccio's 3rd birthday, anxiety over him starting preschool was getting me down. I was worried about all that would be out of my control and all that could and would affect him during his school days. After a good cry and a long talk with my brother, I decided to take action! I become more educated about Luccio's rights and needs. We signed him up for school and give each year's teachers the benefit of the doubt. We prepared information for them so they became familiar with Hydrocephalus. And as a family we will educate our loved ones and those involved in Luccio's life as needed. We try to not only hope for the best, we expect it!! We will be his advocates, we will see to it that his needs are met and that he reaches his fullest potential. We will pray that God continues to bless him and our family! And we will pray for his teachers too because I pity the first one that isn't up to par.

And of course, homeschooling is always a great back-up plan, and maybe the bubble wrap too!!

And in the meantime, we have teamed up with the Hydrocephalus Association and we are going to WALK for awareness and pray to someday find a cure! We are so very blessed with generous family and friends that are helping us so much along the way!!!

Wednesday, September 14, 2011

Alvin Coconut

We have a new addition to our family, Vincenzo's baby Alvin Coconut! He is very loved and takes quite a bit of energy for me to babysit because his Daddy leaves a long list of expectations. For his 5th Birthday Vincenzo wanted to go to the American Girl Doll store and Cafe to celebrate! He convinced his twin brother it was a good idea and so he and Stregga planned the trip and let me tag along. Our good friend Amanda came to! We had so much fun! It is definitely geared towards girls, no doubt about it, the store is so pink and red and shiny and sparkly! The staff refers to everything as "for your girl" for your "birthday girl" etc. So we made quite an entrance when we were greeted at the door and announced we had arrived with our Birthday Boys! The woman at the front entrance looked a bit confused and sort of stepped back a bit to let us through. Luckily the Manager Ed, was fantastic! He made the boys feel very welcomed and showed us around the store. Vincenzo had been pouring over the store's catalog for months, so he knew just want he wanted. He went right for the Bitty Baby section and found his baby. Luccio seemed to be just along for the ride and birthday dessert. He didn't' mind the 2 hour car ride, but wasn't planning out exactly what he would purchase. Until we arrived, then he was so into the experience. He kept saying, "OMG, this store is so cool!" "Look at this, look at this, it's so cool!" He got right into it.

It is a two level store, so we went through the entire place and checked it all out before making our purchase selections. Vincenzo never wavered, he knew which Bitty Baby he wanted and he knew he wanted the crib and clothing for him. Of course, he was shopping with Stregga so he left with bags full of treasures. Both boys also picked stuffed dogs that they loved! We thought the dogs would be what Luccio would be happy with. But, he wasn't leaving without a Bitty Baby twin, he wanted the blond boy doll. Of course he couldn't understand that you don't just pick one off the shelf, you have to take the ones in the boxes. So he had a fit. He wanted the one from the shelf. And he wanted the hoodie it came with. Of course, you can't buy the hoodie separately, it only comes with the set of 2 dolls and all the extras-that we did not need. Luccio was crying and saying his birthday was "ruined" because he really wanted that hoodie for his doll. Luckily Ed saved the day and made special arrangements for the birthday boy to have the hoodie he wanted. Oh the drama!!

Next we had a delicious lunch in the cafe! The Bitty Babies were seated in their own high chairs and served their own cups, so cute!!!

On the ride home Cenzo cradled Alvin Coconut like the newborn he hoped for. But, Luccio's unnamed doll had only his diaper left on and was dancing inappropriately for most the 2 hour ride creating a lot of laughter in the backseat. Until Cenzo finally got sick of it and told him to tell his guy that it wasn't appropriate to act that way around a newborn.

Since arriving home, Unnamed Doll stays in Luccio's bed. He is not catered to in any way, but he holds a special spot among the stuffed animals and is always checked on to be sure he is there for bedtime.

Cenzo's baby, Alvin Coconut requires a bit more care. The first night Cenzo tucked his baby into his new crib with blankets and Fluffy. The next morning began a new tradition of the boys carrying out Alvin's crib to the living room, they each take a side. So funny! A weary Cenzo informed me, "It's a lot of work being a Daddy. I was up most of the night watching on my baby. I rested a little, but not much." Welcome to parenthood my friend.

There was moment of panic that first morning when Cenzo realized Alvin Coconut could not go to school with him. In the end it was agreed upon that Alvin would be strapped into his own carseat and take the ride to school, but not get out of the car. Isabella and I were recruited as babysitters. We were given a long, very detailed list of what to do and what not to do. He wrote some notes for us in case we forgot. Of course his notes looked like a bunch of letters and circles, but he explained what they meant.

Alvin Coconut's care instructions:
-He likes to drink his milk. He drinks from a bottle only. (I guess implying no one should nurse Alvin Coconut??) But, he does have a "machine" (cardboard box aka breast pump??) that his Daddy left for us to get him more milk when he needs it.
-He should have milk at least 3 or 40 times a day
-Alvin likes to wear his pink flowered sleeper. This is not pajamas and does not mean he is a girl. It's just his "Day Clothes." He really likes his Day Clothes. If he needs pajamas he can wear his blue sleeper, but he prefers his pink Day Clothes.
-He can sleep in his crib, with a blanket. He must have a blanket. And a hat when possible. It's best if the hat and blanket match.
-He is little and not used to sleeping alone, so his crib has to be in the room with me or Isabella at all times. If we are napping he can nap next to us, but can't be left in a room alone.
-He is brand new and doesn't understand things yet. So he can't be bad, so he can not be put in time out.
-He likes to be held upright in your arms. If you hold him back too far it makes him sleepy and his eyes close. Only hold him that way if it's time for him to sleep.
-He likes to be held a lot. Try to hold him a lot of the day.
-Don't let him cry, if he cries feed him or hold him a lot more.
-He likes to go out, but he needs his carseat in the car.

I have to admit I was stressed the first day because Isabella and I had quite the responsibility in caring for Alvin Coconut. Especially since he comes with a Baby Record book and I had to check off if we fed, rocked, changed and held him!

Isabella likes Alvin and will often look at him and say, "Cenzo Baby." And she holds him a lot. But, truth be told Alvin spends most of his days in the Mom Mobile either with Isabella and I while we run errands, or on his own while we do whatever we do.

But, at the end of every day we are accountable to tell his Daddy about his activities. So we try to be sure to hold him a bit. And I always make sure to think of a few highlights like Alvin liked going to Isabella's mommy & me class, he visited Stregga, etc. I have to be specific because his Daddy likes to know how many hours did he sleep? How many ounces did he drink? Luckily for me his Daddy still hasn't gotten the whole Math thing down, so he is happy to hear Alvin slept for 27 hours and drank 152 ounces of milk.

Vincenzo has gotten some odd looks and comments from people, even some laughter. People can't quite get why a boy would want his birthday at American Girl store and cafe. They are a bit taken aback when he comes running in with his baby and stroller and diaper bag. It was especially a bit of a shock when he went on a sleepover at a friend's house and arrived with Alvin Coconut and his crib. He takes it in stride. He gets a bit shy or embarrassed when he takes Alvin to a new place or someone's house. He feels the environment out for awhile before he is comfortable including Alvin in socializing. One day he put him in bag and left him next to him. At other times he knows he is in a nurturing environment and unloads all of Alvin's treasures and clothes and shares him with people around him.We have very loving family and friends and they have all welcomed Alvin.

I hate that Cenzo knows to feel uncomfortable in any way for being a loving little guy. But, I am proud that he doesn't let that stop him. In fact, he has even recruited a few friends into his Stroller Brigade. He had his brother and his best friend James actually fighting over which strollers they would use, LOL!

Like Stregga says, he is a good Daddy and has obviously received a lot of love and nurturing. And he has the Best Daddy Ever as a role model!