Thursday, February 11, 2010
The long and short of it ....
This will most likely be a no frills post as I am absolutely fried.Like .. stick a fork in me I am done.As in, just ask my husband, who walked in the door at 8:45 pm and had his head practically taken off before he hit the threshold.
Yep,it's been one of those weeks.Cannot believe it is Friday already.Jam packed every single minute, of every single day.Let's start with the littlest love.She had two of her three big appointments this week.Neurology and cardiology.Neurology is the only service we see that isn't at Children's.We go to UCLA because one of the most renowned experts on Infantile Spasms,is there.Dr.Donald Shields.I love this man.Brilliant and caring and in love with Zoey.He spent so much time just looking at her and marveling at her progress.Progress due solely to a drug that wasn't expected to work after she failed on the 2 front line drugs.The bottom line is that we are going to actually go UP on her seizure medication.I was a bit surprised,as he had entertained weaning her way back in June.His thought process is this:Not only does she have Down syndrome,which puts her at an increase risk for IS but her stroke site and subsequent damage, makes it all the harder to predict the potential for return.He also does not feel comfortable and confident enough that she has passed,age wise, the danger zone of her Infantile Spasms returning.And if they did and more importantly,if the hypsarrhythmia returned,then not only would that be catastrophic to her cognitive and physical progress thus far,it would impact significantly any future development.Another huge factor that he mentioned and that weighed heavily in his decision making process was that regaining seizure control the second time around, if they reoccurred,was much more difficult.So,that was all I needed to hear.The thought of returning to that dark time was enough to make me throw up.Literally.So up the dose we did.We will revisit things in 6 months.
As for cardiology,wow,that was a day.Lets just say,I am not looking forward to our next sedated echo cardiogram 6 months from now.First, my child fought the sedation.Big time.Finally gave in and we got the pictures we needed,then the fun began.As she came out of the sedation,Chloral Hydrate,she was ticked.Like screaming ticked.Screaming ticked for an hour an a half.In a tiny waiting room.Fun times.Nothing would soothe her or distract her.The good news and the most important thing, was that her heart looks perfect again.I say again because after her AV repair,which we call her "second birthday",her heart was perfect.Perfect fix on a larger then normal defect with no leakage.But after we fought Infantile Spasms with ACTH,her little heart developed Cardiomyopathy,specifically the thickening of her septal wall,the muscle of the heart that separates the right and left side of the heart from each other.We were devastated.But through time and even through chemo,our mighty fighters heart shows it is even smaller then it was after surgery.Phenomenal news.
Next up,Oncology 2 month lab check on Monday the 15th.That one is the one that I need to garner peace and strength for.It never is an easy one and in some ways,as we get time and distance from diagnosis,these draws become even harder.So chances are,as Sunday evening arrives,my family will find me sighing deeply,with them asking whats wrong,with me saying nothing and all of us knowing that is a lie.Anxiety stinks.
Another medical update but surprise,surprise,not Zoey but instead my oldest little love,Jessica.Seems that my athlete extrordinaire,has managed to tear a muscle in her hip.Say what?Yes,a muscle in her hip.Fairly rare injury which will sideline her from physical activity for a while.Which is killing her.But she has to be pain free before she gets back at anything and in addition to the tear she has bursitus in her hips.23 and falling apart already.Poor girl.
That's all for tonight.I hear my bed calling my name.Screaming in fact.
Thought I would post a few pictures from our quick trip to San Diego the Sunday before last.We had a great whirlwind trip.Charlotte is getting so big.7 months already.She is giggly and engaging and sitting like a big girl and drinking from a cup and eating like a little piglet.Wish she would teach her Auntie Zoey a thing or two!