Saturday, December 8, 2012

A Virginia Update

I haven't been doing monthly updates since Virginia's first birthday but now seems to be a good time to do one!

Virginia had an explosion of developmental milestones right after her birthday.  She now, crawls, climbs, stands (but doesnt yet get to her feet on her own) and transitions really nicely from sitting to laying down, to crawling, to her knees, etc.  It seems like everything happened at once but it was the very welcome and celebrated culmination of alot of hard work for her.

Ginny has grown to be a rockstar eater.  Who would have EVER guessed?!  Anyone that knew her in the hospital is positively shocked by this.  While we still watch for other sensory issues, it has become pretty clear that eating will not be the struggle that we thought it would be.  She exclusively eats finger foods, with an occasional yogurt, applesauce or other food off the spoon.  She is also almost entirely transitioned to cows milk and sippy cups.  She still gets a nighttime bottle so we are sure that she has a full belly before bed and to be sure that she is staying sufficiently hydrated.

We thought Virginia was showing signs of some food allergies.  She had pretty bad facial redness and a little swelling after eatting potatoes and eggplant.  Surprisingly enough she tested clear for all food allergies last week!  The doctor said that her sensitive skin must have reacted topically but not to be concerned.  Another specialist to cross of our list.   Virginia has now been discharged from allergy, cardiology, and retinology.  She is still followed by opthamology, nephrology, and Occupational Therapy/ Physical therapy. The list of specialists and therapists always seems to ebb and flow but we are very happy to be trimming the list for the time being.

Ginny did have a nephrology appointment earlier this week.  I think we (us and her doctors) went in the appointment hoping that she would be discharged from that specialty too, but that was not the case.  They were very pleased with her weight gain and general development in the 8 months since they have seen her.    Unfortunately they were not as impressed with her kidneys.  Her nephrocalcinosis (kidney stones) have resolved on her left side, but have not resolved on the right.  More troubling is that they seem to be migrating downward and they are quite large.  She also has a bit of hydronephrosis (swelling of the kidney) and some slightly abnormal function based on her blood and urine cultures.  We are still awaiting a few more tests before a new treatment plan is decided on, but it will likely be a wait and watch approach for a few more months.

Ginny now:
weighs 18lbs 12oz
fits mostly in 6-12 month clothes but things are starting to look a little short
Is probably ready to have a real big girl bath since she climbs out of the inflatable froggy tub over and over during bath time.
loves to play in front of the mirror
follows me into the kitchen every.single.time. I go in there
is SO ticklish
eats EVERYTHING off of the floor.  I could vacuum and she would still find things to put into her mouth.  This is bad bad bad for a mama that is already anxious about cold/flu season.

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