Monday, July 2, 2012

June was crazy!

I have been trying to find the time to write an update for a while now.  I wanted to honor a little boy named Mason here.  I "met" Mason's wonderful mother via Facebook just after Emily was diagnosed with Dermatomyositis.  In my book, Emily was severe.  She couldn't really walk for about 2 months, and for a while there she was too weak to roll over in bed.  Her throat was affected, so she had problems swallowing and she was losing her voice. (The upper GI test where they make you drink barium and watch how you swallow proved that her throat was weak on one side.)  She was significantly weak, and it took quite some time before seeing improvement.  When I first met Mason's mother, I saw her pics of Mason and thought, "oh, dear God..."  As severely affected as Emily was, Mason was ten times more so.  The poor little man was in a very complicated looking wheelchair, and he had a trachea.  I don't think he ever lost the skin rash that accompanies JM.  To many of us, he was the face of JM.  He was diagnosed when he was very young (17 months old), but he fought bravely until he could fight no longer.  Last month he developed an infection that the doctor's couldn't get under control.  It was very fast.  Mason can once again move freely, and fly with the angels.  Rest in peace, Mason, and thank you for helping to fight JM instead of hiding behind it.   If you would like to learn more about Mason, or help his family with their fundraiser, click here.  They have a huge event planned!  If you are close to the Hillsboro, OR area, pop by to join them!  God bless them.  I simply can't imagine, and hope that I don't have to. 
February 25, 2002 to June 19, 2012.

What a crazy month June was!!!  This week is a hospital week for us, barring any other natural disasters.  We drive up tomorrow for an overnight.  Emily will have her Remicade, Orencia, and IViG tomorrow.  We were supposed to go last week, but we had severe storms tearing through our area.  When I looked at the weather maps, everything showed big storms heading towards our hospital.  So, I changed the appointment to Thursday.  Next thing I knew, they predicted the storm to hit our hospital that Thursday, and many of the major roads in my area were closed due to flooding.  These were areas that many didn't even think were flood zones!  My parents were in a rather large area that was evacuated.  They were not going to leave despite water covering a road directly behind them!  I panicked, but I finally convinced my dad to come stay with us.  I really, truly thought that they would go home to a soaking house, but thankfully that was NOT the case.  In fact, by Thursday I was kicking myself for not keeping the Thursday appointment.  That's okay.  We will go this tomorrow.

Em's doing much better than I thought she would be, actually.  She's had a couple of random things pop up.  She had a bad knee day, she had a bad knee and hip day, she had a bad ankle day.  Overall she's done very, very well.  Especially considering that last week was already a week later than she should have gone, meaning that now she's two weeks past her normal infusion day.  What's more, she's been dancing around, and acting silly... with energy!  I am sure that some of it is the bed.  She is so excited about having her hospital bed, and she has finally slept so well that she feels better.  I'm certain that it's also partially just being home that helps.  I am so happy that I can accommodate her that way.  My only concern with her is that she has some sort of skin thing going on.  At first glance it looks like bug bites.  She's had this happen before.  When she was in the other bed and the other room she would get these things, but her brother wouldn't.  Now she's in with her sister in the new bed and again, it's only her getting them.  No one else in the house has anything like this, and when she's gone outside she's had jeans, socks and shoes on, but they're on her feet and legs.  I took pictures to show to the doctor.  I suspect that it's something autoimmune.  It's just strange.  I'll have to try to google it tomorrow.   If ya'll have any ideas, feel free to shout them out!  Many of them are on her thighs, and not something I feel comfortable posting pics of, but this pic is one fully formed and one starting out.

Emily had a great time at camp, too!  She had a really great week.  She had some truly wonderful roommates!  Zach had some great roommates, too, but he's still pretty young and a momma's boy.  He said that he's never leaving home again.  His stomach gets badly upset when he's away from me; apparently his stomach hurt all week.  Poor little man  :(  He didn't have that much fun, but it wasn't for the camp's lack of trying.  They did everything that they could.  Below is Emily, Zach, and Kevin while getting checked- in at camp!

Well, I will try to update either Tuesday or Wednesday.  It should be interesting sleeping in the hospital with both kids with me again...  (Sigh)  We'll get it figured out.   Ta-ta for now!  :)

1 comment:

  1. Hey there,

    Are they raised with an almost bump like in the middle? Or is the whole red part raised? Bruce has had one or two raised ones....but the bump in the middle he had all over his body. He also had rashes on both elbows and knees(sides of knees) Do they itch? Also you said Emily could not walk? Why? Is it due to weakness in her thighs or does it have to do with her girdle(hips, pelvis, SI Joints.) Is Emily in pain when she can't walk or is she just weak but if you touch her is she in pain? Sorry lots of questions... Im glad to hear that she sounds like shes doing better.I'm so sorry about your friend and her son Mason...It's
    really hard to hear and to know that anything is possible . Hope your doing well and am so glad Emily gets to stay home.