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Copper

By Margot | March 3, 2008

We have an MRI scheduled on March 11th and an MIBG on March 20th.  HVA today was 19 (Cripes!) and VMA was 5.  The consensus on Sam’s growth plates is that his copper levels are too low, correlated by the fact that, well, his copper levels are too low.  His cirruloplasm today was ten which is very low.  We need to back off on the tetrathiomolybdate and start to get his copper levels up.  The only comfort that I am taking in the very high HVA is that I found an article on Google that stated that low copper levels can cause high HVA.  Do I know that is what is happening? No.  I do not but the fact that the VMA (although it did rise a little) and LDH are not rising with the HVA is a good sign I think. (I hope I hope) The scans will be crucial of course.  Aren’t they always?

In the meantime, Sam is adjusting to his casts as well as possible. I just picked him up from school and he had a smile on his face when I got there.  They had a sub and I asked how it went and he said, “Yeah, she was nice but she didn’t really know what she was doing.”  Sam thinks Mrs. Gage walks on water.  He just adores her so I’m guessing most subs are poor substitues (pun intended).  He shot a foul shot in Friday night’s game and made it. We put him in for the last play of the game and he got a shot up before the buzzer that just rimmed out.  He is glad that basketball season is over because now “it is fair” and he doesn’t have to watch everyone else play.  He got a new cast on his right leg because the blue one was hurting and the tech let him get a blue and green cast.  He said he doesn’t mix colors for most kids but he did it for Sam.  Sam always wants the swirl whether it’s ice-cream or “mixed up cheese” (Colby Jack), he’s a combo kind of guy.  He asks just about every day when he can get his casts off so I’m really hoping we see some improvement on the MRI and he can be cast free for swimming season.   He’s been playing board games at recess with a group of boys, Tanner and Joe are always in the group and have been so loyal and kind.  All of the kids have been really nice to him. 

We took the boys and Mimi to Legoland on Saturday and they rode all of their favorite rollercoasters, drove the cars, and went with Charlie on his fist little guy rides.  He liked the helicopter and the safari ride, not so much the pirate ship.  I haven’t written much about him of late but he is starting to talk up a storm and is quite a happy, funny little guy. He is a verb guy “run!” “jump!” “throw!” “Um! (Let’s eat)” He brings so much joy to all of us, and is the best medicine for cheering up Sammy.  He loves to dance and run after his brothers and play tickle games.  Andrew constantly torments him but conversely, is extremely protective of him and loves to play with him.  Andrew is doing well too.  He’s his usual social self and is putting it all together with spelling and addition and comes up with answers and questions that constantly amaze us.

I am squashing that ugly, sicky pit of the stomach feeling I have.  Neil had just called me with the VMA/HVA and I am going to think copper copper copper unless I am proven wrong.  Thanks to everyone for their kind comments and emails.  We really appreciate them.  Here’s to Spring and a good scan month.

 Margot 

   

Topics: Progress Reports | 2 Comments »

2 Responses to “Copper”

  1. rhonda dudley Says:
    March 4th, 2008 at 12:36 am

    I’m with ya on the whole spring and good scan month!!!!! Heaven knows we need both!!!!

    Thinking about you guys too!!!

    I like a comba kinda fellow!!!! : )

    will be checking back to see how scans go!!

    rhonda

    http://www.caringbridge.org/tn/sydneymarie

  2. Donna Ludwinski Says:
    March 5th, 2008 at 1:58 am

    Oh Margot, the way you always express the joy (with terror just underneath) just takes my breath away. Sam has to win. He just does. It has to be copper and I will be praying accordingly.

    Love you all!