Birthdays

This year is drawing to a close and mixed right into all the holiday hoopla me and the boy have birthdays.

For his this year (last month) we did something special. Well, our family friends did something special. I try very hard to claim my innocence in the whole thing. There was a quiet dinner with just him and his mom.....until the flash mob arrived. About 20 people I think showed up at the restaurant in party hats, sang happy birthday and left. You see the boy is the poster child for introverts. He doesn't like to be fussed over, he doesn't want to be in the middle of a crowd and lots of a attention. And those that care know this about him... so this is how they shared their love. With a tiny party. And then left him alone. IT WAS GREAT!

Birthdays, and regular days, have a way if getting away from us sometimes. It seems sometimes we are just moving forward waiting for bedtime and cursing at the alarm when it goes off too early. When you cant say what is a good day or bad day....each day MUST matter. If that is going to be a lazy day, then own in. If it going to be a sad day, then own that. But....the next day, MOVE forward. The sun will rise tomorrow and you will be given the gift of another day to do it all again.

Yesterday the boy's best friend came over and they took over the house with the strains of jazz music playing through their trumpets. LOVE IT! I'm reminded that three months ago we were hopefully that he would be able to play. And now he is wailing. It makes my heart.....and my head....burst. OH and the dog doesn't seem to like it too much either. She took to howling along with them. :)

Today we had another doc tor visit. Another round of test results. With hope and the thoughts of getting better, hearing it is gone, remission, moving on...Of course it had to be an adventure, because we don't do simple around here. Test results weren't ready, weren't done at all and then weren't sent over. Depending on who you talked to we got a different answer, but we do know those ALTs are even lower and another month will go by until we have to worry with anything else.
The boy is resting on his computer games. I took a nap. A nap! It is a beautiful day.

Anniversaries

As we move closer to the three month anniversary of our little vacation in the PICU, we also have another thing to celebrate. After 90 days has past the boy will have his own blood again! Because of plasma and blood transfusions he has basically been running with someone else’s blood pumping through him. Stop and think about that with me. For three months…. you have MULTIPLE people that have helped you live. I have never been able to give blood before, I was too scared. But now even though I am still freaked out by needles and the idea of it I will. I hope that you will consider a donation as well. I know fully understand the idea that it does save a life.

The rheumatologist told the boy in the PICU that until the new year he couldn’t do any testing. He said, “I’m testing somebody’s blood for a disease...but most of it isn’t yours.” I wasn’t in the room at that point. I missed a doctor visit! Not sure how I feel about that, but the boy remembers better than I do what some of the doctors said. I’m blessed to have him.

But that statement had a major impact on the boy. He didn’t quite know what to think about the fact that there could be 8 different people’s blood in him. I don’t think he has come to grips with that yet, I know it is on his mind because he reminds me. Oh… and now that there is a diagnosis and things are improving with the meds we don’t need to go to any other specialists. YEAH for less co-pays!

We also learned that the boy has what is called hyper mobility.  Think double jointed, but a little weirder. What makes it different? Well it is in his hips and shoulders. For anyone who has ever seen him wrap his arm around his head and hold his own chin all freakishly…. NOW we know how he can do that.  Does it hurt? Nope. He has his own built in parlor trick. Long term, sure he could get some aches and pains from it. AIH causes the same aches and pains. So… damned if you don’t, damned if you do.

ALT - Angry Liver Things

What is ALT?

From WebMD….

An alanine aminotransferase (ALT) test measures the amount of this enzyme in the blood. ALT is found mainly in the liver, but also in smaller amounts in the kidneys, heart , muscles, and pancreas . ALT was formerly called serum glutamic pyruvic transaminase (SGPT).

ALT is measured to see if the liver is damaged or diseased. Low levels of ALT are normally found in the blood. But when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up. Most increases in ALT levels are caused by liver damage.

The ALT test is often done along with other tests that check for liver damage, including aspartate aminotransferase (AST), alkaline phosphatase, lactate dehydrogenase (LDH), and bilirubin. Both ALT and AST levels are reliable tests for liver damage.

Makes perfect sense right?!?!

Yeah I thought the same thing. So what does all that mean for those of us without all the letters after our names? It means if this number is too high your liver is sick. The longer that number stays up the more damage that is potentially being done. Which leads to more scary things like long term issues, transplants and on and on and on. So I remember it by my own acronym - ALT Angry Liver Things.

With the last blood work we found out that the boy’s numbers have dropped drastically in one month! HURRAY! He is at 144 now… and the goal is to get it under 40. Or "normal". This is one time we are shooting for something normal around here!