We're Back

So we're back from vacation in Cali. This year's trip was much less eventful than last year's - and that's a good thing. No emergency room trips or ambulance rides... instead, we spent our time with friends and family and enjoyed good company and great hosts!

It's strange to be back. This week is crazy. J came home with a terrible ear infection so she has not been a happy camper. I took her to the doc and she is now on antibiotics - thank goodness. She gets so frustrated when she doesn't feel well. At least she pointed out what hurts.  She kept saying "my ear, my ear!" and pointed to her left ear, which the doc confirmed is the worst side. C has been acting increasingly worn out and irritable. He had his hematology appt yesterday and we finally - FINALLY! - scheduled his bone marrow biopsy for next Wed. morning. I am nervous and relieved at the same time. If we don't know what's wrong, we can't help him and we've been getting a little anxious. This morning I took him to get a sweat chloride test to rule out Cystic Fibrosis (although we're pretty certain this isn't his issue, but we'll see). They also took blood and tried to get a urine sample but that didn't work out. Lucky us get to try and catch it at home instead. We also get to spend the next 72 hours collecting poop. We are so excited about that.  But it may all be worth it in the end.

I tried not to hyperventilate in the hematologist's office yesterday when he told us to stop the Neupogen injections for the next week and a half (he now gets them twice a week because once a week wasn't enough) because we won't get accurate results on the bone marrow biopsy if he gets a shot within a week of the procedure. So we have to keep him fairly secluded until then because he could get extremely sick if he catches something or picks up some bacteria somewhere. Doc took one look at my face and he knew what I was thinking, but I love that he seems so truly sympathetic - like he understands our concerns and feels for us. He reassured me that it's only for a week and it'll be worth it if we get some answers.

Today we also had a GI appt. and I was surprised when the doc mentioned a syndrome I have been reading about online. He really thinks C might have this syndrome. The strange thing is, through my own obsessive research I had found this syndrome and just told my aunt I thought C might have it because all of his symptoms match. We could be wrong, but it still gave me chills to hear him say it. This syndrome involves the pancreas so the stool samples might show excess fecal fat (the pancreatic enzymes cannot sufficiently break down food). We should have results back in about two weeks or so. This syndrome also causes some bone abnormalities so C will have a full body scan on Mon. to see if he has any issues there (maybe associated with the limp he had a while back?). Next week is a very important week for us and our little guy, but it'll take a few weeks to get all of the results back.

In the meantime, H gets to shuffle and cluck again! Practice tomorrow, dance performance on Thurs. C also has therapy Thurs morning. And this weekend is going to be just as busy. I have a baby shower to go to on Sat and I am taking H to a b-day party on Sun. I'm looking forward to seeing people again. Honestly, I am so grateful for the distraction and the chance to see friends and celebrate happy occasions with them! Sometimes it's hard to feel NORMAL lately and getting out and about definitely helps.

And I am SO READY FOR SCHOOL TO START!!!

H and J will both be going. Between J's stellar vibrato as she serenades us around the house and pauses constantly to demand MOVIE! and H's constant need to TALK, TALK, TALK, I can only DREAM about what it will be like. I love my family! But it is nice to hear nothing once in a while...