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Monday, June 25, 2007 - 4:19pm

Aunt Krissy was over last night spending some time with us and the girls. She helped us get a decent amount of dinner in Hailey and then we all went outside to enjoy the dilly bars she brought us with the neighborhood kids. Feeling confident and energized by the dinner Hailey ate, daddy was dumb enough to offer a bite of his dilly bar to Hailey. She took one tiny taste and promptly threw up (good dinner and all) on our patio, on daddy, and on our lawn. What kid doesn't like ice cream! Needless to say we were fairly dejected by this considering the food we thought we had in her and our concern about her weight loss right now. Shannon did get her to drink about 5 oz of pediasure and calorie powder at 8:30 p.m. so that took a little of the anxiety away prior to our bed time.

Today Hailey seems to be doing a little better than yesterday. And yesterday was a little better than the day before, so hopefully we are trending in the right direction. She has eaten more today and seems to be a little more alert and "energetic" (not quite the right word compared to how she normally is). She has been up two different stretches of 2 hours today, and one time for 1 hour. She also ate a bowl of Easy Mac with extra calorie powder mixed in as well as a fair amount of cheese and cheetos (no, this is not our idea of a nutritious diet, but we take what we can get with her). The most important thing is we have also gotten about 10.5 oz of pediasure with calorie powder in her since midnight last night. We will hope for another 4-6 oz yet today. This combined with the food she will take is a good step towards putting some weight back on. We weighed her at the Dr. office today and she was down to 18lbs 14oz, a loss of about 1.5 pounds since pre-surgery. Not what we would wish for, but not quite as bad as we had feared.

The doctors continue to discuss her Dilantin levels (anti-seizure medication) to make sure she is handling the drug the right way. We will get more feedback on that later today. Signs seem to indicate that her body continues to adjust positively to it. We'll be happy when she is off that medication altogether.

Thursday continues to be a big day. We are ready to learn more.

Sunday, June 24, 2007 - 1:33pm

Because we are so concerned about Hailey's weight and the complete lack of calories/nutrition she has taken in the last several days, I got up every 3 hours last night and gently woke Hailey up to feed her whatever pediasure she would take in her rocking chair and then put her back to bed right away. We did this at 9:30 p.m., 12:30 a.m. and 3:30 a.m. She (and I) were barely awake each time. She only drank a total of about 4 ounces between the three times, but it was something. Hailey then woke up this morning at 7:00 a.m. with Shannon and drank another 4 ounces of pediasure and then of course went right back to sleep until about 10:00 a.m. She did stay up then for about 2 hours straight (our longest stretch yet). She ate a decent amount of cheese and noodles (her favorite) and drank another 4 oz of pediasure during that time. She also walked around a little more on her own, and played, laughed a little, talked, and smiled. She seemed a step closer to getting back to normal this morning. She is sleeping again now, but we are hoping the rest of the day continues to bring more improvement. Maybe her body is adjusting to the seizure medication?? This is what her doctor and the doctor in Madison are telling us (after several phone calls to them the last 18 hours).

Faith is continuing to do very well. She has gotten lots of good mommy and daddy time the last few days and she has been noticeably sweet to Hailey when she has been awake. You can tell in her own little 3 1/2 year old way that she is concerned about her and curious about what is going on. We have been doing a good job making sure she gets enough love, time and attention. She seems to be doing well.

So for now we are plugging along trying to do the best job we can to love and care for both our girls and each other. It's been a very difficult week, but hopefully things are trending back towards "normal" (whatever that is anymore) and we can get some rest and build strength the next few days before the real battle begins.

Saturday, June 23, 2007 - 3:45pm

Hailey continues to sleep 99% of the time since she has been home, and her appetite has not picked up. We were getting concerned about this so we called her doctor and were able to figure out it is most likely due to the seizure medication she is getting. One of the side effects (until her body adjusts to it) is drowsiness and one of the others is lack of appetite. Unfortunately Shannon had to take her to AMC today to get more blood drawn to be sure nothing else was going on. The good news is the tests came back normal, the bad news is she was tortured once again. It took the people at AMC 3 tries to get the samples. Hailey cried so hard she threw up and Shannon cried all the way home. It is so hard to have to do all of this to her. It's really wearing on us, and of course on Hailey as well. So now our immediate concerns are shifting to her disinterest in eating and the weight loss that is inevitebly coming from that. She already has NOTHING to spare.

We wish things could just get easier and go smoothly for a little while at least.

Friday, June 22, 2007 - 8:37pm

We're home! ...and it feels great! Thanks to neighbors, friends, and family, we have a clean house, a mowed lawn, and very little to do's waiting for us.

Hailey is doing pretty well. She has slept comfortably most of the day. She has been up two times since we left the hospital. Both times she talked, smiled, laughed, played a bit, walked a few feet, ate something and drank some pediasure, and then went back to sleep within about 15 minutes. She definitely is still in recovery mode at this point. She is happy to be home but is really liking her bed right now. Hopefully with more sleep and food she will continue to get back to 100% ("Hurricane Hailey").

On Thursday we go back to UW so Hailey can get a check up and get her stitches and staples removed. We will also (and most importantly) meet with the Oncologists to discuss the treatment options for Hailey and settle on a plan of attack. We are trying to relax and enjoy being home, but admittedly we are having trouble shaking the thought that the real battle has yet to begin....