Thursday, October 29, 2009

Well, I am back. At work that is anyways! I did have my scan yesterday and thankfully it is over. I woke up yesterday morning, reached for my neck as I have been and thought for a second--hey! The bump is gone! But then I turned my neck and found it all over again. It hasn't moved and in fact it does feel larger {like it's in deeper now}. Of course they don't tell me much, but there is a tumor {and yes I hate it that this term is used}, but that is what any abnormal mass is called, regardless of a malignancy or not. She told me it is within my soft tissue {which I knew it wasn't on my bone}. But that was about all she could tell me. I meet with the Neurosurgeon next Thursday, so he will be able to access the results then, if I don't hear from my GP sooner. All in all, even if it is related to the benign mass I had removed last year, I will have them remove this one too. Only I will ask to be under GA and covered with antibio's first and after. I will not risk another sepsis bout in any way. Even though it is suspected it was urosepsis, I am not really up to risker another ICU visit. I've been there, done that and I am good with that now ;)
I've edited this post to attach a couple of pictures I have taken of Mikey's hands. We are so fortunate to be in contact with the inventor of the X Finger and hopefully {fingers croassed everyone-no, no pun intended there ;) } he will be able to use Mikey's hands to develop a pediatric version of his most incredible invention.

The first two pictures are of his left hand and the third and forth are of his right hand. Obviously they are palm up and straight on top view. I think they turned out wonderfully & really it amazes me to see the difference in both hands--even though I see them every day! They also display his Clinodactyly very well & you will note his left thumb is possibly the only digit affect {very slim chance though} by Amniotic Banding Syndrome. And we only say this {we as in his Ped, Genetist, myself and all the other specialists} because it does have the "tell-tale" ridge on the top.

And please forgive me, I am not happy with Blogger's photo insert options.


  1. So all you know so far is that it is a tumor, and you don't know whether it is benign or not? Sigh, frustrating. You could have told THEM that when you went in!

    Will they be sending it to be tested?

    I think you are taking the right approach by a) wanting them to remove it, and b) asking for antibiotics prophylactically.

    Keep me posted on the appt with the neurosurgeon! Have you met/worked with this guy before?

  2. Thanks Hon. Ya, basically all she told me is what I knew *sigh* I get it--the techs aren't really allowed to say anything. But it is frustrating.

    I'm not sure what further testing will happen. I already did a whole whack of bloodwork on Saturday, but beyond a Bx, I don't think we will know until then.

    Thanks so much for keeping me in your thoughts. {{HUGS}}