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!!!

Dinner Drama

So tonight we had Sunday Dinner at my parents like we do most weeks. Stregga and Papa decided to cook out on the grill. So there was steak and burgers and veggie patties and mashed potatoes and corn on the cob! Yummy!!!

We got all settled at the table and then...The Bear lost it. Luccio has earned his nickname the The Bear for many reasons, he is snuggly, he is strong, and if you anger him he growls-LOUD!!

So The Bear went into meltdown mode and was crying and screaming and holding his head.
This is not a first. In fact, whenever The Bear is presented with food choices he dislikes similar drama ensues. Usually at home when we are alone we have very few of these episode. Mainly because I serve the kind of foods I know he likes. I always offer new choices as an "on the side" or even on a different plate. We have a pretty strict routine for our day so he knows what to expect.

It is worse when we are out or when we have company. I don't know if it is because he gets overwhelmed, or he senses my stress because I don't know what to expect, or if its too many people harping on what he will or will not eat. In any case its an ugly scene when it starts.

Tonight was no exception. It is always hard to tell, does he not like the food? Is he not hungry?
Those are possibilities today, the burgers were burnt and he had a late lunch.

Is it a behavior thing? Perhaps. He wanted to get down from his chair and watch TV, which I wouldn't have minded except that he wanted me to sit with him and when I refused he went nuts.

Or is it something more? Does he have a headache? Maybe. I have been reading more and more about Hydrocephalus and in many of the stories about people with shunts they talk about the headaches. One woman said it can be brought on from barometric changes and become so severe that its difficult to concentrate until the weather front passes. Interesting. And scary.

Since bringing Luccio home from the hospital I have felt an enormous responsibility. I know all new parents feel that way. When you become a parent you are essentially the world to your helpless little baby. You are its food, its comfort, its life! And when your child has medical needs that go beyond typical you are also the person making decisions that give life or death a new meaning.

Hubby and I share parenting responsibilities in every aspect. Although I am home with the kids during the day, when Hubby is home at night or on the weekends its a fairly seamless transition when he takes over. However, I feel the responsibility of medical care is solely mine. I know the boys in a way that is unique. I notice every spot of a rash, every crossing of an eye, every scrape, every detail. During the first year it was so much worse, I became almost obsessive in my vigilance. Just ask Luccio's Nurse Kellie!! Another Saint we have been blessed to have in our lives.

For 2 years Kellie came to our house every week. At first she helped us take care of the immediate needs the boys had as preemies. Then she helped us monitor Luccio's head circumference changes and medical needs as we went along. After surgeries Kellie was there to help him recuperate. And selfish as I know it is, Kellie was there for me too. On more than one occasion she arrived in the morning to find me completely disheveled and exhausted from being up all night with screaming babies and in the middle of a neurotic fit because something might be wrong with one of them!

She would calm me down with medical assessments and guide me through the next step when one was needed. And she talked me down from the edge of insanity on occasion, like when Luccio had ringworm. He has just gotten home from the hospital from having brain surgery, but somehow the small ring of fungus on his belly was more than I could handle. I was crazed!! I didn't know if I should sit and cry or bleach my entire house. Kellie calmly suggested putting an anti-fungal creme on it and covering it with a onesie. Oh, that makes sense. Crisis averted!!

So, now that Kellie isn't on duty anymore, I am more responsible than ever to not miss any signs that there may something wrong. I'm asking myself, is Luccio having a behavior related moment or a headache related to hydrocephalus?? How do I know? Where do I draw the line? I try to be consistent and discipline both boys in similar ways, but I always worry with Lucc that maybe I am disciplining a behavior that can't be helped.

I have felt so much better since September when Luccio went for a follow up appointment with his neurosurgeon. We received great news- there was less fluid around his brain and the ventricles had shrunk!! So the shunt was working. Relief washed over me! And I felt like I relaxed and spent the last few months enjoying parenthood and having fun with the boys as they develop. But, sometimes, like tonight I fall back into my neurotic ways I can't help feeling like what if I am missing something that I should be noticing??

Super Nanny this week had a family with 2 sets of twins and dealt with food issues. We are going to try her techniques-not offering more than one choice and not letting the children eat off my plate, etc. We will see if that helps with dinner dramas. In the meantime, I am trying my best to remain calm, cool and collected so I can make accurate assessments.