A little piece of heaven

In less than 12 hours Nathan will already have had his surgery. We have to be at Children’s Hospital LA at 7 am, for surgery scheduled at 9 am. They will do the G-tube and Fundoplication at once.

If you would like to stay tuned, please check in on my facebook page as I’ll be posting frequent updates there.

Pray for him please!

When Nathan was diagnosed prenatally, and lived, I thought Nathan would be one of those kids that prove the doctors wrong. I was very proud of that fact. I thought that if we worked hard enough, we could change the progression that the brain malformation would reap on his quality of life.

So I pulled on my mommy warrior outfit and I fought. I FOUGHT. Any of you that have followed our journey will know how long and hard I fought.

And the entire time, we were swimming upstream, against the current. I resisted many of the medical options offered to us. I worked very hard to find natural and alternative ways to improve Nathan’s quality of life.

In the middle of 2011, when Nathan turned 5, I realized that it was time to elevate and take a good hard look at our path. So much of our time, money and energy was going into Nathan. Unfortunately, I couldn’t say for sure if, or how, those things were helping Nathan.

So we changed courses. We focused on our family, on growing as a family and as individuals. We focused on having more fun and enjoying the life that we do have.

Fast forward a year. Nathan just turned 6. For 6 years we fed him, therapized him, and did everything in our power to keep him healthy and happy.

Even though we’ve mastered the happy part, the healthy is suffering. He is just so skinny. He gets tired often. He has bags under his eyes. I know he’s just not getting the nutrition and hydration he needs.

So I capitulated, stopped swimming upstream, and agreed to the G-tube.

Today we finished our last test before the G-tube surgery. They did a gastric emptying and an upper GI study. The results: he IS refluxing. So not only does he need the G-tube, he will also need a Nissen Fundoplication.

I feel sad, I feel relieved, I feel tired, I feel hopeful. I am glad Nathan will be getting the tube so we can keep him nourished and hydrated. I am happy to stop the constant fight of “You have to eat, Nathan!” I am sad that he will have to go through these medical procedures. I am scared. I am hopeful that his life will improve after this.

Once he’s recovered from the G-tube surgery, we move on to the next step – the hip surgery.

I’m tired of going against the current. I am relieved to finally let go. I am hopeful that in the long run, these surgeries will bring great benefit to Nathan.

I fought, and I fought hard. Now it’s time to accept, and move on.

We had an appointment today with a surgeon. Nathan’s G-tube surgery is scheduled for August 27th.

It was a tough decision, and one we’ve been postponing for a long time. But the time has come. Nathan weights 30 lbs. He’s now 6. That’s just not acceptable. He lost his desire to eat. Every meal is a struggle. It’s hard to keep him hydrated. So we decided to make the tough decision, the one that will bring the most benefit to Nathan.

Tomorrow we go in for a Ph probe to see if he has reflux. The results will help determine if he needs a Nissen Fundoplication or not. Then surgery 10 days from now.

Hip surgery will happen soon after that. It was originally scheduled for September 21st, but he needs time to recover from the G-tube, so we will push that back to mid October.

It makes me sad to have to put Nathan through all these surgeries. When he was younger I thought that if I worked hard enough I could keep him from all these surgical procedures. But as he’s gotten older I find that it’s like swimming against the current and eventually you just can’t win, you’re always against the current. So we’re letting go.

Other than these upcoming surgeries, Nathan’s had a great summer. We spent 2 weeks at the beach with family and he had a blast. He is happy, spending a lot of time playing with his brother and sister, getting better and better with the Dynavox. He is still a very happy boy.

I’m back to work full-time so I don’t have as much time as I used to. I miss writing on the blog and being more available. But life is a series of ebbs and flows, and all is good.

Thanks for your support, I’ll keep you posted!