Monday, October 27, 2008

Catching up

I'm a bad blogger, what can I say. I just can't seem to find the time to sit everyday and blog. I look at some people's sites and I know I'm inadequate.

TJ's birthday was wonderful. Thank you to everyone who sent cards and/or presents. He is starting to realize what mail is and enjoyed getting the envelopes. He got some great gifts. The "Big One" (isn't there always a big one?) was a scooter. He had been using one of these in these in his physical therapy sessions,he really liked it and did well. He liked it better than the bike. I think because he always saw our neighbor Andrew riding his scooter down my dad's hill and TJ knew about scooters from him, he thought they were cooler.

Well, TJ is a scooter kid now. He loves it. One of the things Randy & I had dreamt about when we were buying this house and TJ was so sick in the hospital was TJ riding his tricycle around our floor plan. THis is an old house with the central chimney so it has a round floor plan. It's so much fun. When Randy was finishing the floors, one of the driving thoughts was that TJ will have a blast playing on the hard floors with his bike and cars.

So realize that TJ's bike and scooter are in the house and we have daily chase scenes with one of us on the scooter and him on his bike. He rides the scooter forward and backwards and is starting to try and turn it. He's really impressive.

So he had 2 birthday parties and we all had a great time. Last year was an emotional milestone with his 2 year birthday and all he'd gone through. This year was very much the same. After spending the first part of the year in the hospital again, and dealing with the life and death of the whole things once again, this birthday was a very sweet celebration.

I feel like we've turned a corner of sorts with TJ and his health. Someone asked me if we were back to normal yet. I replied without thinking, "We're learning what our normal will be."I just pray that this continues and I try to trust the health he's found and been given.

WHat's our new normal like? Good question.

Well, medicine is obviously a daily part of it, but not as much as we had been on. RIght now he only takes 4 - 5 doses a day. 2 of those are his anti-rejection or Immuno-Suppressent medicine Prograf (also called FK). He takes Imodium 1 0 2 times a day and he takes Sodium Bicarbonate once a day. That's it. Amazing. Last year we were on 10 different meds and 2 dozen doses. There are days I have to stop and think to myself, have I forgotten something. Nope, just don't have as many to give. It's nice. We have our days back again. We have our nights back again. I don't have to wake him up in the middle of the night for meds. He only takes 1 medicine at a time now, I don't have to give more than one and hope he doesn't get sick on them. I'm getting spoiled

Sanitizer and hand washing now that we are getting out and about more is almost a little obsessive. We have to keep our hands clean, it's the best way to avoid getting sick.

Normal 3 year old stuff, playing, reading, fighting, tantrums, laughing, jokes, and games. Let us not forget coloring, painting, and Play-doh. Dinosaurs, Bob the Builder, WOnder Pets, Caillou, Clifford, George, and don't leave out anay and all construction vehicles.

Our normal is great. I find myself unwinding and yelling less. I find myself having more patience and being more creative. I find myself giving thanks more and more every day.

Our normal life is slower and calmer than it was a year ago. Less doctors and appointments, less stress. It's nice, I can see our future again.

TJ did have a clinic visit this last week. At clinic they check bloodwork, Echo, EKG, and do a hands on physical exam. He is 39 1/2 inches tall and 40 pounds! He's a big boy, but appropriately big. Not overweight and putting on muscle, that's a good thing. The doctors were thrilled at how good he looked.

His echo looked great, EKG was normal, and overall good blood work.

We do have a potassium issue, we're really high. Almost to the point we were hospitalized before. His immuno-suppressent causes that. We need to watch Potassium rich foods and avoid them. I will admit that we havent been giving it much thought, oops! So this weekend we cut back on some of his foods, we go tomorrow AM to recheck and see how we did.

Liver enzymes were the other problem, they are elevated again. The Liver docs think this is due to EBV Disease. Yup, that's right we don't just have Epstein Barr Virus, we now have the freaking disease. Actually nothing really changed except what they are calling it. It's because he is immuno-suppressed. His immune system can't stop the virus from reproducing, so even though he doesn't have an actual infection, his body is dealing with the virus. This virus commonly causing liver inflammation, thus the elevated Liver Enzymes.

They want to track his EBV levels and his LFT's (that's the liver tests) monthly and monitor them. THey aren't compelled to do anything because he isn't presenting any symptoms. They think he will have these elevated numbers for a while, years possibly.

The possibility of the PTLD (what he had Jan - March) is still there and there is no crystal ball that tells us when or if it will come back. It could rear it's ugly head anytime, even years from now. I try not to think about that and instead focus on how well he looks and his energy that just radiates off him

It's that energy that is so reassuring. When he was at his sickest, you couldn't feel him. That used to scare the hell out of me. Now you can feel him before even touching him. It's the way it should be. I'm trying not to panic about all the crap that "could" happen and instead focus on what is happening. Easier said than done for a Mom, I'm sure a lot of you know what I mean.

Alright, I've babbled long enough, wrappin up. Fingers crossed potassium is better today and we can go a couple weeks without more trips to doctors.

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