good news, bad news

Sophia’s cardiologist contacted us and told us that Sophia probably won’t need surgery until sometime before Christmas.  Because her VSD is diminishing and she has “cleverly” reduced the pressures on her right side, the risk of pulmonary hypertension is decreased so they can wait longer.  Turns out we were overly optimistic about the hole closing entirely on its own (or enough so she wouldn’t need surgery at all).  If she gets sick or stops gaining weight so well, they’ll have to operate sooner.  We are so relieved since the bigger she gets the less risk there is that she will end up with a pacemaker.


We had a fun adventure on Tuesday, surprising Grandma at work for her birthday.  It was Sophia’s longest car ride yet:  13 miles!  She cried most of the way there, but not at all on the way home, so maybe we are making progress.  It was fun to see Grandma so surprised and happy. We went out to an early lunch to one of our favorite places.  There weren’t too many people there yet, so we thought it would be okay for Sophia.


You’ll see some new pictures this week using Papa’s new lens (a late Fathers Day gift).  He was disappointed that the cute UPS lady didn’t wait at the door for him like she used to; he’s convinced I scared her off (my guess is that it was all the baby stuff we have been receiving).


As you all know, the 35W bridge over the Mississippi collapsed this week.  Although it is probably only a mile from our house, we didn’t hear anything at the time.  We just had a little bit of electrical flickering.  We are so relieved that our friends and family are all okay.  We have been thinking about the victim’s families a lot, especially the woman and her 4 month old baby who lost his Papa.  That hits pretty close to home.  I can’t imagine never again seeing the way Sophia looks so adoringly at her dad.  Saturday morning we did see the President’s helicopter fly over on his way out of town while we were out planting a tree.  We’ll head over to the site at some point when things calm down.


Although Papa’s photo was not accepted to the State Fair show, he has entered it into a show at the Hopkins Center for the Arts.  We hope he gets some good exposure there.  He also decided to use up his credit at the Rocky Mountain School of Photography, taking a documentary class at the end of August.  Luckily my Mom will be around to help me out, but we’ll still miss him.


We also had our very first service visit from the school.  Two feeding experts came out (they also do OT and speech), so we got a couple of new suggestions.  We hope the outpatient speech therapist calls this week as Sophia’s aversion to eating is getting worse.  It is so traumatic when she cries right when you sit her on your lap to feed her and doesn’t want to have anything to do with the bottle.


Sophia started kicking her legs in unison this week; it’s so fun to see her progressing down the developmental chart.  We are now in chapter 2 of her gross motor skills book! You definitely don’t want to miss the video of Sophia dancing with her father’s help.  Look out Michael Flatley!


There are also new photos from Sophia’s first visit from my friend Karin and her daughters Hannah and Madison.  They were very sweet taking turns holding her.  Madison gave us our first chance to explain what “Up syndrome, I mean Down Syndrome” is.  I stumbled over the extra chromosome idea (meaningless to an 8 year old),  which led John to explain that having more of something isn’t necessarily good, like when you have too much cake and get sick.  I guess we’ll have to work on that one, but I do like the idea of calling it Up Syndrome.


Siobhan spent Friday morning with us and was a great helper:  On their walk, she picked up Mukwa’s poop for the very first time (and was shocked to discover that it was warm).  We’ll keep you updated if she ever progresses to Sophia’s diaper…


Monday we head in for a different kind of MIC-KEY button; hopefully this will take care of Sophia’s discomfort when she eats.  The GI folks finally heard me when I said for the tenth time that these problems started with the new button!