Thursday, April 28, 2011

Clinic April Appt.

So despite a few labs that popped up, Gary's doctor didn't seem to alarmed.  I am still sorting through this as far as how I feel.  Upon examination, she found calcinosis to be a tender point in his hip.  She doesn't seem to think it is from progressing weakness.  She mentioned his hip might be a little tight, but once she hit the calcium, that is when he complained.  Obviously that is not a good thing being that the calcium is interfering with the way he walks but at least it doesn't seem to be that his muscles are effected.  I think.  I still don't like his energy level change, and the fact that he has been using extreme caution on stairs and getting in out of the car.  But still handling the action of a step fine.  Not has great has before but fine.  I guess at this point I am going to keep a close eye on him.  Even if a lab pops up, making sudden changes in medicines or treatments isn't what I want to go through either.  Having to wait to see if a new med would work ect,.   We had labs done again to see if Gary needs another round of Rituxan.  We should here back today if that is the case.  She said she noticed a few changes in his capillaries but overall, from what she can remember, they look better. All medications will stay the same.  Toe's are still crossing.  Just for information purposes and documenting:

  • Crossing Toe's: *Note orthopedics said it could be a muscle imbalance, translation weak muscle.
  • Overall Tiredness
  • Complaints of ankle and hip pain
  • Skin-I think looks the same purple reddish but overall no ulcerations of anything like that.
  • I noticed this month bursting capillaries in his nail folds but by the time we got to the doctor they had grown out (meaning the capillaries damage,  burst, bleed, then dry out and then heal under his cuticle. These are very small so its a matter of knowing what to look for.)
  • Elevated Aldolase level.  

Auntie came with me to the appointment yesterday.  She said after we were done I didn't do a good enough job communicating my concerns and description of what I have been seeing and what I was feeling.  Hopefully I will catch her on the phone and at least get to say  my Mommy Tummy (maternal instinct) are feeling funny.  I have bells going off right now.  I try to stay rational but it is such a tricky action or emotion to deal with.....decide what is necessary to become upset about and get things done or remain calm, rational, see how it plays out.  After hearing about his level that popped up a bit,  I was just amazed about how I could see it in his actions and feel it as a mother.  I think a lot of times too, our doctor doesn't like to make quick decisions, especially with everything that Gary is already on.  Gary's JDM has done a great job of keeping everyone on their toes.  I think its fair to say that she likes to discuss with the rest of the department if any changes should be made.  

I know there are families out there that have been doing this for a long time now.  Fighting this disease.  I wish I had a hint of where the end of it all is.  I suppose I get a little worn down.  You hear all the reasons of why its ok, but it doesn't feel ok to me.  I posted in the JM Mom's board something about listening to yourself.  If you think things are not right, your right.  It will all play out.  I don't care if Gary is running and playing.  I feel like its my job to keep it that way.  Conversations that end with, "well at least he is running and playing", I do find comfort in, but that comfort is short and sparky.  He still has a disease.  You might not be able to see it, and wonder what I am so upset about, because that is easy for you.  I see it.  I feel it.  I live it.  My tummy hurts.  So does my heart.  I do take comfort in God's love.  Peace will come over me when I let it.  I hear Him and feel Him and  He is there to help.  I take comfort in that.

More pictures from Make A Wish.  Anyone getting tired of hearing about it.  I'm not.  We received our professional pictures that Make A Wish came in and did.  They are amazing.  A lot of articles were done.  Their were a few things that were completely true but they did a fantastic job.  One of the things that was not true was the fact that Carpinto's Brothers (a local company who sells and delivers gardening and landscaping supplies and materials) delivered the play chips that went underneath the play set.  It is true they did, but Make A Wish PAID them for those wood chips.  They were not donated.  They actually were delivered and we had a small problem that I won't share.  I usually don't write letters to people but I have to say that I think I might let them know that they received quite a bit of local publicity from Gary's wish.  Maybe next time they might consider cutting Make A Wish a break?  : )  Anyway, here are a few of my favorite pictures I wanted to share.  Thank you Brian David Casey.  They are awesome.  I will treasure them always.   **Make A Wish called yesterday and wants to feature Gary's wish on there website**   ***Thank you to Apollo Sunguard, Dochnahl Construction, Rainbow Play Systems***    *****Thank you to our Make A Wish Volunteers who are amazing!  Ken & Cherelle did such a amazing job.  Cherelle and her husband were here working a lot of weekends.  Selflessly donating there time. *****


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