Riding Bikes and Pickles

Stacy here, it was so nice to have Jason surprise me and be here with us this week.  It is helpful to have an extra driver to take kids to activities that are all at the same time.  BUT, more than anything, it was nice to have our family COMPLETE!!  He left today and will be gone for 2 weeks this time.  We are sad to see him go, it gets harder and harder every time he goes, for all of us. Jason, sad to be going home to an empty, lonely house and the rest of us missing him here. Having him here to participate in our family activities (sports, concerts, playing, etc).  We know this won't last forever, but it is sometimes hard to see to the end when it just keeps going.  This week marks a year when Sierra and I came for her transplant.  Other than a short 2 months we were at home for September and October, we have been here for a year. We are looking at the calendar for this month and repeating some of the same stuff we did last year.  All fun stuff, such as the hospital prom and the San Jose color run.  It's just a little de' javu and realizing how long it has been.

Anyway, on with the events of this week.  Gage had his clinic appointment on Monday.  He is quite the comedian when asked questions from our wonderful nurse practitioner, Jenna.  The conversation went something like this:

Jenna asked, "So, Gage, what did you do this weekend?"
"I rode my bike."
"Ha, ha Gage, you know you can't do that, what did you really do?"
"I ate some pickles."
"Boy, you know just what buttons to push on me.  What else did you do?"
"I rode my bike and ate pickles."
"Okay, what did you really do?"
"Well I didn't eat pickles, but I really did ride my bike.  My dad and I rode our bikes to Hunters baseball game."

This is funny, because these are 2 things he is not supposed to be doing.  He is on a sodium restriction and can have maybe one small dill pickle a day.  He hasn't had any for a long while, he was just yanking her chain.  However, I didn't know he had ridden his bike.  My only excuse was that sometimes when dad is in town, things are done that mom may not know about.  It was a great appointment, he is doing so well, They are letting him go almost 3 weeks until his next appointment.  No changes were made, just a reminder to wear a helmet if riding his bike and it cannot be in any traffic. Quite the clown!

A while ago we talked to the doctors about Sierra's hair falling out and a rash she had on both sides of her face.  They decided to run some blood tests to test for an autoimmune disease.  We didn't hear anything for awhile and kind of forgot about it.  The falling out of her hair has is back to normal and the rash has improved.  Wednesday morning I received a call from the pediatric rheumatology clinic wondering if Sierra could be seen that day.  Our doctors had sent a referral to them and told us it could be a couple months to get in.  So, I worked out a schedule that we could get Sierra to clinic that afternoon.  When we got in with the doctors, to my surprise, this was not a clinic that they had had a cancellation and were placing Sierra in as a fill in.  They had seen Sierra's labs and were concerned enough that they put her into the schedule to see her that day.  Apparently, there is a lab they drew called ANA (Anti-nuclear antibody). This antibody is seen in people who have lupus.  They draw this lab on all kids pretransplant as a routine lab.  Sierra's level was low before this transplant.  The level now is "much" higher post transplant.  This could be indicative of a "drug induced lupus", meaning one of the medications she is on could be causing the lupus.  The only problem is, she is already on the medications that they would treat this with.  We were told, "she is a very complex case."  So, for now they are not going to do anything.  Sierra had 10 vials of blood drawn on Friday for further testing to get some more answers.  She is to see rheumatology every 3 months and get a dilated eye exam to have her veins in the back of her eyes looked at.  She is to wear heavy sunscreen or a hat outside and if they see any tan lines when they see her next, she is in big trouble.  My heart just ached for her, can't this poor girl ever get a break?  It is always something.  She takes everything so well and is always so happy and helpful.  She is trying so hard here at school and making some great friends.  I just wish for a little while she could be "just a teenager" living a care free life.  We will have more answers in a few weeks, but for now, we are not going to worry until the doctors tell us to. Kind of took the wind out of my sails for the week, but we will just keep swimming.

Megan had a choir concert Friday night.  She did a great job. 

Jason and I were able to go out on a quick little dinner date before he left.  It was so nice!!