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9:00 PM (Randall posting--and, if you'll note, I've figured out how to create my own log-in, so I'm not sure we'll need to indicate at the top of the message who is posting because the bottom of the message will indicate who posted, right?).

Today was clinic day, and it was my turn to take Sophie. Since this was not a sedation visit, we were somewhat flexible on our time this morning. We left a little before 8:00 and arrived at the clinic around 9:40--traffic was worse than normal. Sophie was mostly content on the ride in but got agitated about 2/3 of the way through and insisted that she wanted Susan (which became something of her mantra for the rest of the morning). We got to the clinic and got her checked in--she now weighs over 35 pounds! When it came time for the doctor to check Sophie out, she was really, really reluctant to go in the exam room (same place she got the PEG shot, if I remember correctly). While it is not at all unusual for Sophie to get agitated, it seems as if the steroids means that she'll remain agitated for much, much longer and will be pretty much unconsolable.

The treatment went fairly well, although she got pretty tired of sitting in my lap--and I got pretty tired of her heavy, sweaty body sitting in my lap (although you know that I love her), so we were both pretty ready to get out of there as quickly as possible. Unfortunately, Sophie's patience ran out about 1 hour before the medicine did, so that last hour was pretty cranky. Thankfully, the clinic provides pizzas for lunch and food is always a good distraction, particularly in the throes of steroid treatment!

The ride home was pretty uneventful, Sophie slept most of the way. She snacked and napped for the rest of the day until this evening when we went to get some last-minute school supplies (tomorrow is the first day of school--it's hard to tell who is more excited, Elisabeth or her parents).

Treatment-wise, this is where we stand. Sophie has five more days of steroid treatment, after which she will take a week-long break. On or around Labor Day, we'll get another CBC (blood count check) to see where she's at. If her counts are high enough, we'll continue with the second half of this round (no steroids, different drugs). If her counts are too low, we'll wait a week. Once again, we're not sure what to wish for.

I will say, that given how crabby and demanding Sophie has been these last few days, it seems as if Susan and I have been remarkably patient with her. Not completely patient, mind you, but it has been surprisingly easy to get up with her twice every night, tending to her every whim, and enduring her frequent and sudden fits. I tend to be less patient with the girls than Susan, I think, so I am particularly thankful for the grace afforded us during this stressful time. Thank you all for your prayers and kind words.


Calgon, take me away !! right Susan. I feel for you and can relate, who knows some days, I can't seem to do anything to please my girls and then again they are little angels. According to what I am hearing from you and the steroid crankiness, I think Madelyn and Sophie are on the same page the last few days.And I am with you guys, my patience is rather thin these days. Oh well we will face today with assurance that this will be a good day, we will make the very best of it and hug and kiss them as we have the opportunity. Hope all goes well with school Elisabeth. Love and Prayers Deanna


I clicked on Susan's link from Rudy C.'s website. (I attend the same church as Rudy and his family.) My mother is in remission from multiple myeloma. Will be praying and thinking of you, and checking back for updates. God bless you guys.


I am glad to hear the steroid treatments are coming to a close. The picture really shows the story about how difficult this treatment is on the body.

Quinn went back to Countryside today after taking pretty much the whole summer off. She woke up very cranky and stated "I doesn't WANT to go to school..." Oh well, back to the routine for all of the girls.

Quinn finished up her prayers last night and she remembered Sophie (just before or after she prayed for King's Dominion - I can't remember which) but after she finished she asked if Sophie would be at school. Her memory amazes me sometimes...Even after all of these months the children miss her.

Good luck to you guys as Elisabeth returns to school and you enter this next phase of treatment with Sophie.

You are all in our prayers,
Kim Schmidlin

This is when you realize small children like Sophie shouldn't have to go through these kinds of battles... :( I would gladly help you guys if I could but I live far far away in Quebec :(