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Wednesday, July 21, 2010

Change of plans

We arrived, unscathed from our road trip from Florida. It was pretty unevenful and Avery did great. We had to unpack the car...ok well Jeremy had to unpack the meticulously packed car at the hotel in Mobile as they had had multiple break ins in the past few days. Needless to say he was not happy. Then we arrived at St Jude and the Grizzly house was full so they put us back at the Target House. More room, but no maid service.

Avery had a full day of appointments today at St Jude. It was great to be back in a place that is so well put together, although it was a very long day. ANC came back at 1200 - so lower than when we left FL but not dramatically. She has grown an inch and is now 31.1 inches long and weighs 21 lbs. Avery met with the dentist and they scraped her teeth -- yes she had plaque buildup on those 2 bottom ones already. Who knew you were supposed to brush a baby's teeth 3 times a day?! He wants to continue following her as Chemo can affect children's teeth so we'll be back to see him in October. Her underbite and grinding of teeth are all due to stress and not fixable at this point...cosmetics later on I suppose.

Her MRI and lumbar puncture were this afternoon so we didn't get any results before the end of the day. We did however meet with our Nurse Practitioner regarding Avery's feducials and she consulted with Dr Boop (neurosergeon). They decided to take out Avery's feducials as they believe one of them is working its way loose. Normally they would not remove them, but because Avery is still so young, her skull is still soft and not retaining the screws as well as we'd like. Good news is that she doesn't need them anymore so good riddance! Unfortunately, this also means we have to have surgery on Friday to remove them. The plan is to be admitted at 7am on Friday at LeBonheur and she will have the screws removed and her hearing test done at the same time. Anesthesiology will most likely keep us over night so our plan to leave on Friday will be pushed back to Saturday.

Tomorrow we will meet with PT and Speech, as well at the eye dr before getting our results from the MRI and LP. Our Dr is on leave again -- go figure -- so we'll meet with one of the other Dr's to discuss the results. We end the day with a 4 hr behavioral test so we can see if Avery is still behind in development and if so, where. This test is done every year so they can measure the effects of the radiation and chemo. We had it done this spring as well to attempt to get a baseline for her. This is more like playtime for her, so it won't be as bad for her to sit through. Friday will be a long day as they require us to hang out in a hospital room to make sure the anesthesia doesn't have any strange effects on her. Seriously? She's been knocked out more times in the last 8 weeks than we could ever fathom -- I think we got this down. But whatever....those Anesthesiologists are in charge up there...we don't mess with them. To top it off, they have to have a fresh blood draw prior to surgery so she will get poked. Not really too worried about this as she is a trooper with shots but hates to be confined. In KC when this whole project began, they started a line in the ER and let me tell you -- she was NOT HAPPY about being wrapped in a sheet to keep her from moving. We are going to try to do it without that as I think that was her problem more than the poking!

Anyway, I better get some work done...It was strange being back at work last week, but it felt good to have some control back, well to at least think I had some control back in my life. We are really anxious to get done and get home....and to see everyone!


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