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Flying then crash

Sorry to be so quiet. Kite flying was excellent. The winds picked up our kite and it flew high with little effort. In fact Special K was a little disappointed, because she kept wanting it to crash. Little T has been cleared for limited contact with people and we figure that meant Mother Nature. So he scooted about on the dirt with great joy. He kept trying to head for the puddles. I stood in front of them. He was too delighed with his new found freedom to care much. He flung rocks at the fence. Best game ever! I'd forgotten what joy Special K took in such simple things.

On Monday I crashed to earth. We went to his Gastroentrology appointment. Always disappointing. He never eats enough. Never grows at all. Never gains enough weight. I've written a lot about that before. What I haven't been writing about. At least not much, because it's utterly gross and grim to face...every morning he vomits. And I mean vomit, not baby spit up, but full-on retching that involves his entire body. What a horrible way to start your day!

His doctor prescribed Reglan. His food sits in his stomach from night until morning instead of being digested. You can imagine how we know this. Reglan works great except there's a small risk of side effects that it can cause neurological problems like loss of balance. Let's hope that in this, Little T is not the exception.

We also received the full bill of repairs for my house in Oakland. Very sad for me. I've gotten over thinking it's my fault, but it still makes me sad. And I needed to escape for a while, so I played lots of World of Warcraft when I had computer time.

Little T's platelets went down to 176, but continue to be normal as does his fibrinogen. His tumor continues to shrink. His MRA confirms it's shrinking. The process seems to exhaust poor Little T, because he'll take 7 hour naps then sleep through the night.

Comments

( 8 notes — Leave a note )
poets_hand
Apr. 6th, 2006 08:48 pm (UTC)
His poor tummy. :(

But I'm glad that his tumor is shrinking, and that his platelets and fibrinogen are improving.

"He kept trying to head for the puddles." If it's warm enough, I'm the kind of mom who lets them get into the puddles. I have great pictures of wet, muddy, and happy kids. Of course, my kids don't have immune issues. Would puddles be too germy for him?
waterowl
Apr. 6th, 2006 09:58 pm (UTC)
Yeah with Special K, I let her get into puddles. I also used to let her eat dirt and sand. Got kicked out a playgroup, because of it. :) Still would let her, but now she thinks they're "ewww gross!"

His hemo doctor said he could see other kids, but said they had to wash their hands first and told me to avoid crowded places. So I think puddles are out. Even if his immune system was fine, I prolly wouldn't let him into puddles until he can walk. He has a G-tube, and I don't think getting puddle water on his tummy would be a good idea.
poets_hand
Apr. 7th, 2006 02:55 am (UTC)
I didn't think about his G-tube. That would make puddles a less-than-ideal environment.

Someday he'll be splashing in puddles, and you'll be able to post lots of wet, muddy, smiley photos of him. :o)
waterowl
Apr. 7th, 2006 05:06 pm (UTC)
I sure hope so! :)
jennyrob
Apr. 7th, 2006 03:08 am (UTC)
I took Reglan when I started regularily vomiting acid when pregnant with Sam. It cut down on the acid, but I still barfed a lot. It also can cause psychiatric problems (in adults), and I had my first full-blown panic attacks while taking it. It was a good thing I was "working" at home, because one day I would have done someone bodily harm if I'd been at work.
(Anonymous)
Apr. 9th, 2006 08:55 pm (UTC)
playing in the mud et al
So sorry to hear about the vomiting. How hard on everyone. I hope the Reglan works well. I took it for a couple of years (as an adult) to good effect for a never diagnosed stomach-not-processing-food thing, and never had any side-effects, and hope that's true for Little T.

I;m glad that blood levels continue good, and tumour continues shrinking, and dirt is being played in and rocks are hitting fences. I hope puddles get jumped in soon!

I have NEVER been successful at kite flying so am quite envious of Special K.

Brigid '78
plantgirl
Apr. 11th, 2006 02:33 am (UTC)
I used to puke every morning from stress when I was in high school. Little T has all my empathy, because it is No Fun. I'm crossing my fingers that the Reglan works well!

It was great to see you this weekend, and I was so very happy that Little T was able to be at the party as well. He's such a lovely, happy boy. I'm really in awe that he has such a sweet temperment given all that he has to deal with.
(Anonymous)
Apr. 11th, 2006 03:55 pm (UTC)
Reglan and Vomiting
First off, I completely sympathize with the morning vomiting from mommy's perpective. It's definitely not spit up!! Charlotte has been doing that off and on for about 4 weeks. It's not fun. And sometimes she makes the most horrific sounds that remind me of a scifi creature. Her tummy is sometimes quite full, too, though none of her docs want to address that, it seems.

My heart aches for her, and now for your little guy. Just the cleaning up alone could drive you over the edge.

Second, Charlotte was on Reglan when she had her NG tube. It was kind of prophylactic--they give it to many heart patients with NG tubes--as she hadn't had true reflux by then. She didn't really start to vomit until a month after the G-tube was inserted and 3 months after we stopped Reglan. Our docs here don't think that Reglan really does much and they were all very eager to get her off of it (don't know why). I'll keep my fingers crossed for you that they are wrong and hope hard that it helps quickly.

Did he have a fundo with his G-tube?

Best and fingers crossed for a puke-free day,
Ilene
( 8 notes — Leave a note )