Tuesday, February 28, 2012

Post Holiday Blues... or bumps in the road

First, I'm happy to report that we had a fantastic start to the school year - yes it's been awhile since I've posted :( - and a wonderful Thanksgiving, Christmas holiday and winter break.  Zach has made the honor roll all year, and is excited about school. He was placed in the Highly Gifted Reading program and high math which has given his self-esteem a much needed boost. Sophie is doing very well in 1st grade, her reading is testing above grade level and she is settling into her new peer group well. Girl Scouts and Cub Scouts keep us busy when we're not doing homework.

For Christmas we were surrounded by the love and friends an family and wallowed in our primarily tech free gift-giving. The kids got back to basics and spent time playing games and cards, and generally having a great time.  In January we got back to our school routine and even found some time to adopt a new kitty, a little one-year-old black and whit sweetheart named Fiona.  Then... we hit a bump.

At the end of January, Sophie was admitted to the hospital again.  This time for acute pancreatitis - a very painful inflammation of the pancreas.  after a fun weekend sleeping at the Port Discover Children's Museum in Baltimore with our Daisy friends, we had a great and normal Sunday.  That night, however, she awoke in tremendous pain and we had to call the paramedics to rush her to the ER.  After a CT scan it was determined that it was likely her pancreas causing the pain and vomiting, and knowing her history, they had us transported to Georgetown University Hospital where the team that knows her best could get to work figuring out what, exactly was happening and nursing her back to health.

We stayed in-patient for a week and while we were there Sophie had two MRI's and an ultrasound of her abdomen.  She had been having some additional non-abdominal issues over the past few months, so while we were in they did a complete workup and she had a CT of her head, an EKG, and a cardiac echo.  The head T was clear, whew, no sign of hereditary AVM that caused my Mother's brain hemorrhage either!! - so not we're looking for why she's getting headaches so much.  Also she had been having episodes of rapid heartbeat, and has been tentatively diagnosed with SVT (Supraventricular tachycardia).  This is a non-life threatening condition that causes a rapid heartbeat from misfires in the upper ventricle of the heart.  For Sophie they last for a minute or so, but have no lasting effects.  She is on a 30 day heart monitor now to see if we can get a reading of an event to see how her heart responds to it.

The poor thing had to go with out eating for most of the week in patient, but returned to her hearty appetite quickly requesting steak & cheese sub the night she was cleared for a regular diet.  She remains on several medications to support her pancreas while it heals. 

During the multitude of scans, some inconsistencies were found that the oncology team wanted to inspect further through the nuclear scan.  This would rule out a recurrence of the cancer.  We were surprised to hear that the tumor was 'on the table' again - one of the oncologists, in the sweetest voice explained, "The tumor is always on the table, however, this time, thankfully, we believe it is under the table."  We were relieved that they didn't think it was an eminent threat, but still very worried.  The week after she was discharged, we went back for the nuclear injection and then the scan.  Apparently there was still some question after the the scans were complete, so we had to return the following day for another round of scans - boy, that brought the stress level way up.  Thankfully, the repeat scan ruled out a recurrence, but still seeing 'something' we will return for a repeat MRI in early April once the pancreas has had a chance to heal and the surrounding tissues recover from the trauma.

Sophie had four total IV's put in, which now come with heightened stress and a physical response - full with screaming, writhing, and kicking.  Each new IV had me promise here something that would calm her - at least long enough for them to get he needle in.  The first, at the ER, I promised a new American Girl Doll (she gave up her first opportunity for this by opting for Fiona the cat instead), at the hospital, another IV had to be put in for her PCA pain pump, so I promised a shopping trip to the American Girl store, then came the nuclear medicine injection, where, in a panic to just get it done,  I promised she could get her ears pierced almost a year ahead of our original schedule.

So after a follow-up doctor visit one day, we headed off to Tysons Corner (anyone who knows me,  knows that just going to Tysons was a big deal), bought a doll - her name is McKenna - had lunch with her, and then headed off to get her ears pierced.  All in all it was a wonderful Mom and Daughter day.

Zach has been such an amazing brother and son throughout all of the commotion.  While Sophie was in the hospital, Zach's 5th grade class had a Poetry Cafe where each student read a poen from a recent poetry project in front of fellow students and faculty.  He had planned to read one he wrote about the cat (We have a cat named Fiona, she's new to our family, she peed on my backpack and climbed up our Christmas tree) but instead, ad libbed with a new poem her wrote just before heading to the stage.  The topic was his sister and her trails, and from what I heard from moms that attended and faculty, it was very moving and emotional.  Each time one of them told be about it they started to cry.  I'm tearing up no, just thinking of it, and I wasn't even there.  Unfortunately, Zach didn't' write it down, so I can't repeat it for you now.  I've asked him to try an remember, but it seems to be over for him now and he's moved on.  This just reminds us about how much Sophie's medical problems weigh on everyone else around her.  When she is sick, we're all get sick with her in our own way.  The stress is there, whether it manifests in a poem to the world, or is kept inside until it can be released later.

Zach's birthday (2/6) fell on the Monday after Sophie was released from the hospital, so we all took special time to spend with him, heading out to dinner at Buca Di Beppo.  At Zach's request, we sat at the 'kitchen table' and enjoyed chef's specialties and a giant fudge brownie dessert - larger than his head!  On the 19th, we had many of Zach's friends and family join us for an afternoon of laser tag with an Angry Bird theme - it was the Angry Birds v. the Mischievous Pigs - everyone was a winner in this match-up and had a great time. Later that evening we celebrated Mike's birthday (2/22) at another dinner at Bucca do Beppo - it was an awesome day!

So, now were getting back to our regular schedule.  For our family Christmas gift, we started a family membership to a local health and racket club.  We had been doing well beginning a routine of exercise several times a week.  Now we are working to get back on that schedule, release some of the stress of the past month, and start looking toward warmer and calmer days.

As always, I'll try not to wait too long to post - and will make an effort to post happy events as much as the difficult ones.  Hopefully we'll get to catch up with you in person sometime soon!  

Love and peace to you all!

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