After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Friday, April 17, 2009

Ahoy Matees!

Summer is sporting a new look these days....Dread Pirate Summer!

We had an eye appt. this week...she passed the vision test and has no goombas (what the doc calls tumors, I guess kids' eyes. can be misaligned if they have them), but still has one eye that crosses slightly. She has to wear a patch one hour per day for the next 6 weeks to correct the muscle control issue. The doc feels that it should resolve by then :)
Morgan came in and saw Summer wearing the patch...she giggled and said "Subo's a piate"...naturally, I had to take it a step further...
We just happened to have this Build-a-Bear pirate costume that fit her perfectly...well, almost. She has no tail for the hole in the pants (thank goodness!) and her abdomen is quite a bit longer than the stuffed animals'...it creates a nice halter top showing off her battle scars...appropriate for a pirate, don't you think? :)

Morgan ran and got the Build-a-Bear superman costume and asked me to put it on her...I guess I should draw the line somewhere? I had her put it on her puppy instead :)


Clinic was this week also. Summer now weighs 16 pounds! She gained 25 grams per day in the the last 2 weeks and her labs are looking better all the time. As of today, her TPN recipe had a couple of things removed and is being reduced to 18 hours per day (down from 20) with a 6 hour break! This is a big step! Yeah Summer! We are also trying to increase her solid food intake....she isn't cooperating very well, but I will keep shoving it down her throat :) Nice mom, eh?

Up until now, Summer has had lots of runny poops all the time. As a result, she has a nasty rash more often than not. Her doc prescribed an anti-diarrhea medication...almost magically, it started working overnight! Summer now has a "new bum" as we call it when it all heals :) It seems kind of ironic to me this week just as we are starting to give Summer this medication to help slow down her stools, we are pumping Andrew full of laxatives to get him to pass the magnet he accidentally swallowed Wed. night :) If you would have told me last year my life would be all about this oh, so loved, but so necessary bodily function, I would have laughed! Well, poop is my reality. Oh, the joy I feel...

Sunday, April 5, 2009

Update of the week

This week's clinic visit was fairly uneventful...not such a bad thing :) Summer now weighs 15 lbs 8 ounces and is over 25 inches long! She is still growing at a good rate and all her labs are fantastic :) Good job Summer!! We are not increasing her feeds quite yet because she still has a lot of stools every day and goes in and out of rashes. We are going on a short trip next week, so no change is a good thing too :)

We have a routine check-up on Monday with the pediatrician...we were supposed to check in with him at the first of Feb...oops, time flies. Then, the following week we are back to clinic and at Children's again for an Opthomology check-up. Keep thinking healthy thoughts for Summer :)