Friday, October 17, 2014

In the blink of an eye

Sheesh, things happen fast. One minute my little brother is 1, the next he is 3. He is in his second year at Edgie's, going "full time" this year. Even with all of the days off and stuff it has been good for mom and dad. They both have more time to work which means more money for toys. Woot!

Now, me, I mastered PreK last year - shout out to my special lady Ms. Glick. I have moved on to K with Ms. Wat - what up, Ms. W?

What I haven't mastered? Perfect health? I know, it is crazy, I have mad abs and no body fat - I should be the picture of health. But that fatty linger is still there, lingering in the background. I have switched to a new specialist, supposedly Mount Sinai is THE place for pediatric liver stuff, so I am under the care of Dr. Nanci Pittman now. Dad and I went to her last month and they literally squeezed blood out of me while I screamed my head off. You probably don't know because I usually am a little angel in public, but I can be quite the drama queen. I cannot wait until I learn to curse so I can properly express my feelings about stubbing my toe.

Any way, so Dr. Mencin at Columbia is out. Pittman is in. But, guess what? The lab lost my test results. I have to go back to Quest and give MORE blood. Not excited about that. What do you think I can get as compensation? A basketball? A new scooter? A car? From what it looks like from one of the two tests that the results came back for it looks like I have a marker for some sort of auto-immune. It might not effect my for a while. And we do not know yet how it will present. I guess I want to find out so if there is something I can do, besides giving up meat and fatty foods, to keep it from activating. But, if I cannot do anything about it do I really need to get stuck by an extra needle?

Saturday, September 15, 2012

Alive & Kicking

I love kicking! Plus, I left you hanging after that last entry for way too long. You probably thought something happened to me. Nope, nothing. The doctors just stopped following up so I took that as a sign that I will be fine and to just keep on keeping on. I have my three year check up soon, Emmitt and I are going together since he has his one year. Man, time flies!
I started school this week at Edgies again. I am going five days this year. I have two really nice teachers and I already learned about Rosh Hashannah, the Jewish New Year. We ate apples and honey and played with toys.
My birthday party was pretty awesome. Aunt Audrey got a bounce house and I stayed in it for hours. I heard everyone saying that it was the best party ever. How are mom & dad going to top that next year? Hot air balloon?

Thursday, April 7, 2011

Exhale. Then hold your breath.

We got a call from the doctor today. The endoscopy went fine, nothing to see there. The liver biopsy from the hepatologist revealed that my liver is 10% fat. There is inflammation, which was the catalyst for having the biopsy in the first place, but there is no scarring. My doctors want to talk to the genetic team to hear their results and then will look at my liver using something called electron microscopy. For right now I am sitting tight and awaiting my next instruction.

Monday, April 4, 2011

Weekend Update

Everything went great. I am home safe and fast asleep. The Drs. should have some lab results for me by the weekend. I'll keep you posted!

The Big Day

Today is the big day for my endoscopy and liver biopsy. I am worried more about the results than the actual procedure. Sure today will be a long day, but hopefully they will figure out what is keeping me from gaining weight. My biggest concern is that they will just want to do more tests. Egad!

I better get going, I have to be at the hospital at 730 for a 9pm appt. No food or drink past bedtime, 5 am was the cut-off for water. Poor me!

Friday, April 1, 2011

All in a day's work.

The day has finally come. On Monday I will have an upper endoscopy and liver biopsy. They will be performed one after the other under the care of Drs. at MS CHONY. The metabolic geneticist and the hepatologist (liver specialist) will each study a sample of my liver. The gastroenterologist will be looking for any physical signs that would make eating uncomfortable for me. They will put me under general anesthesia so I won't feel anything. I really don't like anesthesia, it is scary. Luckily one of my nurses from the NICU, Katie, will be there. I really like her - last time I was at the hospital we cuddled.

Saturday, January 22, 2011

How YOU Doin?

In addition to climbing up and down every flight of stairs I can find I love to run around. Literally. I can run! This is awesome! And you already know that I love to talk. Next time we talk ask me my name, it's "e-zee."

You have been asking about my health and I have not had much to report until now. You probably know I am a skinny, little dude. I am tall so that is good, but at least 5 pounds less than I should be. They are not sure if it is complications from my original birth defect or if there are outside factors. Right now I am seeing a gastroenterologist and he is sending me for tests all over the place. Well, they are all at Columbia, just all over my body.

First I had a sonogram that showed my liver was slightly enlarged and had a weird texture. The blood flow looked good somewhere in my belly area, there was some random spot but it seems to be nothing. Blood tests showed some elevated levels in my liver but my nutrition levels were surprisingly good.

My  EKG (heart) scan went okay. It wasn't nice that they kept me waiting in the office so long, and I screamed the whole time (much like my sonogram). The nurse kept telling me she wasn't hurting me. So I must have been confused. The were looking for hyper-pulminory tension but the blood was flowing so that isn't the problem. They did find that I had holes in my heart. The holes may close naturally, or may be too small to cause damage to the heart and lungs.

I also had a chest x-ray. Considering one lung was flattened in utero things are looking good.

The next steps are taking another blood test to see if my liver levels are back to normal. If not the next step is a liver biopsy. The GI also wants me to have an endoscopy. If I need a biopsy then they will do them both together while I am under anesthesia.

So, it is not easy, but it is my life. And when I am not being poked and pricked I am off and running!