NAM!

Hey Mom, it's me, Isaac!! One day we're going to really laugh about getting up at 4:00 in the morning to drive to Atlanta for my NAM adjustments. Three dollars a gallon for gas might even be funny one day, too. Okay, maybe not so much but I am looking pretty cute in this NAM thing.

It's all coming back to me now. This is the point in my life when I became obsessed with coffee. It's a love affair that continues today! Long live the coffee bean!

(Mom, while we're on the topic of beans I'd like to bring to your attention that the one up my nose is starting to get a little out of hand.)

The NAM is a retainer of sorts that helps in three different ways. It brings the lip together, along with the palate and also holds the nose up in preperation for surgery. It is tremendous work and committment that brings with it great rewards. As a parent nothing feels better than

knowing you're doing everything possible to benefit your child.

At one-month-old we took Isaac back to the cranialfacial clinic for a long day of appointments. We saw the occupational therapist and nutritionist (to make sure Isaac was getting enough to eat), the surgeon, and also the orthodontist. This is when Isaac was fitted for the NAM. If you've ever had a mold done for braces this is exactly what they do to the baby. It's a little stressful but only lasts for a few moments. The mouthful of goo is to get an impression of the mouth so the NAM can be created to fit your baby's mouth. They actually hold oxygen by the baby's nose while they're getting the mold. I didn't feel like the oxygen was "close" enough to Isaac and actually grabbed the nurse's hand and held it closer to his nose. Mamas of any temperment: bold or timid, loud or quiet can find strength and courage they never knew they had to do things for their kids. Sometimes protecting your kids and social manners will not see eye to eye. It's okay; follow your instincts!

Two weeks later we went back to get our NAM. Between the fitting and the delivery date we started taping Isaac's mouth with the tape they had given us. We were already starting to train his mouth to come together!

At six weeks old we started wearing the NAM. He was so tiny then!! I held him, rocked him, and walked him a lot convincing him this was a good idea. He slept with it in pretty well as long as I waited until he was good and asleep before putting it in. The more they wear it the more it helps them. It was good for us that we could take ours out. Isaac wasn't found of eating with it in. In fact he thought that was a terrible idea!

After a little practice you get skilled at making the tape. It helps to have some made up ahead of time early on and then one day, like magic-looping the tiny rings through the tape doesn't seem so difficult anymore. You learn how to slip the appliance out for feedings and then slip it in on 'em after their sleeping. I think people were more curious about the tape on Isaac's face than anything else. (Lots of time in public I gave Isaac a free pass from wearing the NAM so I could buy groceries in peace. A mom's gotta do what a mom's gotta do!)

At first, the visits to the cranialfacial center were weekly and then bi-weekly. Then, closer to the surgery we went weekly to get the most results as possible before game-time. Commuting in Atlanta traffic can be about as pleasant as a root-canal at times but well worth the benefit it was bringing to Isaac. It was encouraging to see the results and know that it was really working. We could actually see the gap in the lip and gums closing.

Isaac,the ultimate joy-boy!

It's painfully clear that I'm behind on my blogging. Isaac is almost two now and there remains much left unsaid!! It would be nice to talk about our experience with the NAM and perhaps get through our first surgery before high school graduation. But first things first, a certain mother-0f-the-heart has given wise advice to write about the current day stuff as I try to catch up on the past.

Those who know Isaac understand how completely he lives up to his name. Isaac is a Hebrew name that means "he will laugh." That seems like an understatement! Isaac has contagious joy that delights those of us blessed enough to see him in his element. Speech teachers that withold much wanted toys and various nursery workers do not know the real Isaac. The real Isaac is full of smiles and looking for every opportunity to share his joy with the world.

At the moment we are almost two-years-old and our most important project is speech. It's nice to know we're done with surgery for now and will cross that road again somewhere around age 3 or 4. The first year was intense but now things are much calmer. Isaac has been in speech therapy for almost a year now and has several signs that help him communicate (more, eat, drink, all done, down, milk, etc). Once a week we have a speech therapist from Babies Can't Wait come to the house to play and stimulate speech. I'm thankful for the signs she has taught us. They help Isaac tell me what he needs and that cuts down on a lot of tantruming. And all of the mothers said, "Amen to that!"

M's are the easiest sound for children with clefts. I'm waiting for Isaac to say some p's and b's that requires air to push over the palate. I see Isaac starting to explore and do different things with his tongue and mouth and know that he's getting close to these things. Patience has been my friend when it comes to Isaac's speech. I've had a couple of moments where I wondered if something else was causing the delay. I don't believe there is. His speech will come it's just a slow process. I celebrate him for doing things that others might find ridiculous but knowing what's an accomplishment for your child is important. My first child was and still is overwhelmingly verbal and it has served me well to see the difference in their personalities and celebrate who they are instead of comparing the two and wanting Isaac to be the same as Emily.

Besides who needs to do all that verbal stuff when you can play basketball? Isaac fervently loves basketball. His priorities don't exactly place speech at the top of the list. There's more important things like climbing to do. He has watched me play with my younger brother since he was an infant and finds it quite insulting that I would offer him a size-appropriate ball. No, that simply will not do for him. He's made it crystal clear that he deserves a grown-up, official ball. None of this baby, wimp sized stuff for him. It's mom's ball or nothing. I am coaching Emily's basketball team and wear him on my back in a patapum pouch during practices. He couldn't be happier than out there in the middle of the basketball action.

Isaac, I will wait for you to talk as long as it takes and will continue doing everything we can to help you get there. I know you can and will do it.

Love,

Mom