catching up

Monday: “Auntie” Annie was in town from Denver and stopped by to meet Sophia.  She brought her the cute dress (that you can’t really see) in Tuesday’s picture.  We grabbed it quickly in the middle of the night when Sophia had an explosion in her jammies.  It didn’t even get the required Dreft wash before use–it was an emergency situation.  Prior to Annie’s visit, Sophia got her first bath in her froggy tub that.  Mukwa is happy to have us back as we are taking lots of walks with the stroller.


Tuesday: Great Aunt Peggy and Great Uncle Jim (not pictured) came with Grandma for lunch today.  Sophia had an audience to watch her drink her first full bottle since being banned from taking anything by mouth (yeah!).  


The Minneapolis special ed team came by in the afternoon to present their proposed plan for Sophia’s educational development.  The summer session starts the end of June, so the OT and PT should start coming then.  


We’ve been making a series of  doctor appointments–seems like we’ll be visiting a specialist of some sort every week for the next few months.  


Papa was appointed Vice-President of the neighborhood association tonight–we sat out swinging on our front porch swing, reading stories and snuzzling, waiting for him to come home.  I guess we didn’t get out there soon enough though to see the wallet thieves running through the neighbor’s yard.  That’s one thing about the hospital, we were pretty much isolated from most of that real world garbage.  


Wednesday: Today our adventure out into the world was walking back to the hospital to get a new prescription for Albuterol (to help with Sophia’s congestion).  Thank goodness for Simon’s stroller as it would have been a really hot walk with the Baby Bjorn.  It was weird to see several of the nurses we’d been working with–it was like old friends we hadn’t seen in awhile.  Since we were in the neighborhood, we had to stop by Ben & Jerry’s for a treat.


Rebecca from my office came by in the afternoon–it was great to see her, but also a reminder that in a week and half I need to go back to work.  It’s been really nice to be able to have the time off to be with Sophia through all of this, and I’m sure it will be hard not to spend all day with her any more.  Luckily, she can stay home with her Papa (the doctors have been very clear about no daycare).  


I think Sophia heard me telling Rebecca that she really doesn’t have fussy periods at night like the books warn you about.  Tonight she just couldn’t get settled after her dinner.  We had several theories, including proving me wrong, making sure Mom and Dad didn’t watch a movie, or Papa’s perennial favorite, that she was too warm.  As it turned out, she was finally happy again after eating her next meal.  That made us concerned about her being hungry, since she is only allowed a certain amount of food right now.  


Thursday: Home health came again today and verified our concerns about hunger–Sophia lost 2 1/2 ounces since Sunday.  She should be gaining 1/2-1 ounce every day, so the nurse was pretty concerned.  We called the cardiologist and got permission to give her more food as long as she tolerates it.  We’ll have to keep watching to see whether her diuretics are properly matched to her new intake.  Home health will  be back on Saturday to check her weight gain.  We’ve been really careful not to tire her out eating, so I don’t know what would cause the weight loss other than she is growing more than her nutrition intake supports.  


She had another really restless time today where she was flailing her limbs and breathing heavy and couldn’t be comforted for long. We ultimately decided that since that was how she acted when she was in pain, we should give her some Tylenol.  That is strong stuff as she was mellow for the remainder of the day.  It’s hard because we don’t want to give her more than she needs, but we don’t want to be insensitive to her pain either, with her incision and stoma (stomach hole) both healing.  


I thought I had a lunch with some friends today, so I went to our standard restaurant to wait for the others to arrive.  It didn’t take me too long to realize that although I had it in my head that we were meeting on Thursday–it was actually the 15th (which is tomorrow!).  It made me laugh that I can’t keep my relatively open schedule straight and that the other newer mom in the group did the same thing once!  Her son was able to talk already, so liked to repeat “Wrong day, Mama!”  Hopefully, I’ll do better with doctor appointments and work commitments.  I think Papa thought I was coming home early to check on the two of them…