I haven’t posted anything about Clayton’s wild ride since I don’t know when.

We are slowly approaching his second birthday and I figured an update was due.

Well folks, with no questions answered or mysteries solved, Clayton is healthy as an ox. I cannot tell you what was wrong with him in his young age, but I can tell you now that he is well, eating like a horse, running about, trying to babble a bit, and into EVERYTHING.

Although I have no clue as to what the cause of his illness was, I am just glad it’s all over and we can live and grow together!

father/son bonding (Taken with instagram)

Today was surgery day. Thank goodness everything went smoothly. He had the NG feeding tube removed and a G tube placed. While under they also did the skin biopsy for Dr. Marble, now well have to wait on the results of that. Hopefully something with come of it. As of now I hear my sweet baby boy grunting and snoring in his hospital bed. Hopefully he can sleep through the night!

The sweetest boy I’ve ever known

I think we are finally going to get rid of the NG tube! Though he’ll still have a feeding tube, it will be directly in his tummy. We are meeting with the surgeon on Thursday! I’m praying things go well and we can set up something soon!

But, in addition to Clayton’s “illness” we just found out he may be deaf in on ear.

It seems like every time things start looking up we just get knocked right back down.

I suppose if I’m going to do this I’ll do it right and start from the very beginning and lay all my cards on the table. Im diving into this one head first. There’s no turning back now.

The title of this portion is “Clayton. My miracle child.” because that’s exactly what he is, a miracle. Trying to get pregnant was on of the worst experiences of my life. I don’t think I could have come to a rougher patch in my life when I stumbled upon that one.

My husband and I were only married for a short time when we started trying for our first child. After a few months, the first sign of possible pregnancy, a missed period, came into play. After weeks of no period I got excited and took COUNTLESS pregnancy test. With an overwhelming negative from every single one I made an OB appointment to find out what was going on. Once there they did the routine pelvic exam, pregnancy test, the whole nine and all that jazz. And with another negative, I was sent home with no explanation as to why I was late. A few more weeks pass, nothing. Soon it had been a few months, and still nothing, so naturally I made yet another doctors appointment. Again at this appointment I get an exam, pee test, the whole nine, and STILL NOTHING.

After my appointment, I tell my self that I’m stressed and I’m throwing my body off track and I just have to clear my head and move on and things will fall into place and I will get back to normal. Before I know it, a year had past, a whole entire year, with no period, no baby, and no clue as why. So once again I go to the doctor. She tells me I may be infertile, just the boost I need, right? After her shocking news she decided to put me on a med to make me have my period and a med to help me ovulate.

I bet everyone is thinking they is where Clayton comes into play and can’t wait to hear the rest, right? Wrong. We’ve still got a long way to travel in this journey my friends, so keep reading.

After a rough 6 months on fertility treatments and no end result, it started to take it’s toll on my marriage, and as a whole, my husband and I decided to stop treatment. If it was meant to be it will be, and if not we have eachother.

Time pasted and life went on. We still secretly tried desperately to have a baby, though neither of us would admit it. And, finally, after another 6 months or so, I had a gut feeling something was a brewin’. I hadnt been late, yet, but I knew I would be. So, as excited and giddy as I was, I rushed to the drugstore and bought up a stock pile of pregnancy tests. To my delight, they were finally positive!

I found out I was pregnant at 4 weeks, the absolute earliest that it is possible to find out. I just knew in my heart that I was growing something so wonderful.

After an amazing 39 weeks and 3 days, my wonderful baby boy was born. Though I had to be induced and eventually have a c-section, it was the most amazing experience of my life. Who would have know that in the span of 2 years I’d have the worst and most amazing moments of my life.

After a week in the hospital, we finally got to take our baby boy home. But it wouldn’t last long. Just a few short hours after bringing baby home, we got a call from the pediatrician saying we had to come in immediately the next day.

From there, we found out his PKU infant screening had come back abnormal. Once the additional blood work was done we were informed that his glucose level was extremely low and we were sent to Children’s Hospital NOLA.

Once at Children’s, he was diagnosed with CPT2 dificientcy, which means his body does not breakdown and/or store fat, which is why his blood sugar was extremely low. Unlike our body, if he doesn’t eat at least every 3 hours or eat the appropriate formula, he body starts breaking down and running off of his stored sugars.

In the hospital, he was put on special formula and didnt take to it very well and his weight dropped dramatically. He was put on and NG feeding tube. The tube passes through his nostril, down his throat, and directly into his stomach. Because of this, he refuses to take a bottle whatsoever.

He now has his own team of doctors and specialists, including a genetisct, a dietician, and cardiologist, and a urologist.

After a total of almost 2 long months at the hospital, we are now home and have been for almost 2 months. Though he is on a feeding tube, we are home. No more I.V.s, no more morning weigh-ins, not more nightly vitals, and not more cramped hospital rooms!

He is gained weight back and packing on the pounds beautifully. And I have faith that he will continue on a great road to growing up.

I’m new to all this, and I know that most people that I’ve see who have tumblr usually post funny and/or silly things. I’m not one of those people. Throughout this blog, my main focus will be discussing, venting, and concerns about my son. He’s 3 months old going on 4 and he’s special needs.

Now, when I say special needs I don’t mean that he is mentally challenged. He has a genetic metabolic deficiency that doesn’t allow his body to store and/or break down certain fats and requires my or my husbands care 24 hrs a day, i.e. special needs.

As I continue this wonderful journey of raising him, I will post as often as possible about our daily lives. Maybe someone out there on the interweb can relate or is maybe even going through the same thing, who knows, maybe I’ll even help someone other than myself by doing this.