Another good day today. Still on track to come home Wed.

Mallory is officially off of her morphine and lipids through her IV. The only thing she is still receiving through the IV are her antibiotics. She should finish those up by Wednessday, and as long as everything keeps going well, she will then be able to come home. Pray that she does not get another infection.

Marci, the girls, and I went down to the hospital last night. Mallory was...HAPPY! It was weird. She was almost back to her normal self. She had physical therapy yesterday, and said she surprised everyone with how much she walked. They also put her in a whirlpool. She also went to the school on the hospital grounds yesterday and was able to do some school work. This is a totally different kid than I saw on Sunday. She did end up losing her pick line, and received 2 IV's, which was traumatic for her. Hopefully she gets to come home next week and there won't be any more IV's.

Mallory had her first physical therapy today. Although Mom didn't say much about it, she did say it went pretty well. The doctor came in and said she was working on Mallory coming home next week. Don't know if I already mentioned this...they're back to the original diagnosis of MCTD. All of this was just complications from it. Please pray that Mallory come home (ready) sooner than later.

Mallory finally has a come home date of (hopefully) two weeks from now. She starts physical therapy tomorrow, and supposedly they are going to be pretty aggressive with her. The infection is still present, but her fever is down.

Mallory got an infection in her pick line today, and has a temperature. They're hoping to be able to treat it with antibiotics without having to remove the line. The pain management specialists came by and spoke with her about different options, but no decisions were made yet. This is a set back we were hoping to avoid.

Mal had a pretty good day today. No tests, just resting. She only got cranky when her meds started to wear off, but was good to go again about 10 minutes after she would take them again. Hopefully tomorrow will be the same.

The results of the endoscopy and colonoscopy (that I didn't know about so did not report on) were clear. Still waiting on the biopsy of her feet to see what nerves are affected.

Mallory made it through all of her tests today, and felt a little sick. She and Mom both got no sleep last night and are extremely tired. Hope to hear results by tomorrow evening (if not, then by Monday).

The upper GI did not show any results, tomorrow is the endoscopy. Mallory was not able to eat again today, and in a very foul mood. While I was visiting her the nurse came in to take her vitals. I noticed that her temperature was up around 100 again, and her blood pressure was up as well. She has received lots of cards, balloons, blankets, etc, etc, etc. She really does appreciate all of them, so keep em coming! I think receiving them helps her feel connected.

Mallory is apparently not very happy tonight. They have not let her eat since midnight last night, and she is finally hungry (probably due to the steroids). At any rate, they came to take her to radiology about noon today, finished her last picture at around 7:30 pm tonight, and are supposedly taking her down for another sometime around 9 tonight. Mom also missed lunch and dinner, so I imagine that both of them were pretty short with each other/hospital staff. Dad was able to go down tonight, which allowed Mom to slip away and eat finally. I'm interested to find out what all of these x-rays end up showing.

Mallory has stopped vomiting, and was able to eat 1 1/2 pieces of pizza today! Tomorrow she is having an Upper GI, and Thursday she will have a scope. They think that possibly some of the pain in her feet is caused by a restriction in blood flow, and are going to try placing nitroglycerin patches on her feet tonight to see if that helps. Her blood levels show that there may be pancreitits, but they will know more about that when they get new blood work in the morning.

Mallory is about the same today. They are supposed to do an endoscopy early this week to check for inflamation. They are probably going to start her on steroids today to help with this (hopefully).

Mallory is still vomiting today. No new tests, just resting. She has requested no visitors for tomorrow...she's not up to seeing people right now. However, she loves getting cards and balloons. You can mail them to her home address, and someone can carry them up to her.

Mallory has continued to vomit today, for the second day. Several doctors came by, and pretty much told them that they still aren't sure what's going on.

Mallory had a pretty good night last night, not the best ever, but better. However, today she has vomited all day. I could hear her again while talking on the phone to my mom. Other than that, no new news to report.

Mallory had a biopsy today, and is feeling pretty good. She didn't sleep last night, but is hoping that tonight goes better!

First of all, Sparticus is the name of a character on the kid's show Lazy Town, except on that show he's calls Sport-icus (big sigh of relief).

Second, Addison's surgery went off without a hitch. For starters, Addison never even mentioned food today at all. This was definitely an answered prayer...she wakes up every morning and asks (without fail) what is for breakfast. Today, I was prepared with every form of Jello I could come up with, and she never even asked for it, nor a drink! She wasn't allowed to drink after 10:15 because her surgery was scheduled for 1:15. Naturally, they didn't even come to get her until after 3, but like I said, she never complained.

She was away from us for about an hour, then we got to go into recovery with her. I was apprehensive about not being able to go back with her, but the hospital had a child life advocate come out and talk with us and explain everything that was going on. If anyone ever has to take their child to the hospital for anything, definitely ask for an advocate (the nurses tend not to offer this assistance, but when you ask for it they are more than happy to give it to you). This is the second time we've used one, and it truly makes all the difference. Coming out from the anesthesia, she cried for about 30 minutes. The first thing she said to me was "(sob) I (sob) want (sob) a (gasp) doughnut!" So I knew she'd be fine. And she is...she really doesn't even recall anything, and is having very little pain.

Mallory had a pick line put in today. This will make her IV usage much more user friendly! Still no biopsy, maybe tomorrow. Today's good news is that they lowered her fluid intake at night. This means she doesn't have to visit the lady's room so much during the night. Up until now she has been having to get up at least every hour. As a result, my mom was having to get up with her to unplug her from one of her machines, and wheel the other one behind her. Last night, Mallory only had to get up once! Which means she got more sleep, which means she was a much happier camper today. We went up to see her and she looked good ... let's hope this continues!

I think I can breathe again...I've been waiting for this day to be over!

Addison

I am going to take a short break from Mallory to talk about Addison (except to say that Mallory's biopsy has been moved to Wed.).

1. Addison's surgery is scheduled for 1:15 tomorrow. She can't eat anything after tonight, and can't drink anything after 10:15 in the morning. It's going to be a long morning.

2. Last night she came home with an imaginary friend...named Spartacus.

Mallory

The CT scan Mallory had done yesterday showed some cysts on her lungs. Tomorrow she should undergo a biopsy on her lungs as well as her legs. She's still not sleeping. At some point this week they should put a pick line in to help with her IV's. They think they're circling in on a diagnosis, so hopefully we'll know something concrete soon.