Things are going GREAT!!!!!!!

August is almost over and I have not been updating. Life has just been so busy and so crazy. Not much has happened, Avarie is continuing to do great! She is getting stronger and they started weening her off of her immune suppressing drugs this week. It will be still several months until she is completely off of them, but this is a good start. She hasn't been having any problems, which is amazing. Things have gone better then any of us could have hoped for.
Avarie has begun to walk a little unassisted. Well it was only a little, until today. She had her first outpatient Physical Therapy appointment today and she was so excited about it that she went there walking up and down the hallways showing off and then when she got into the therapy room and saw a play structure and swings and mats everywhere, she went crazy and spent almost 45 minutes at an almost run going on everything. She was upset when it was time to go and was refusing to get off of the play structure. By play structure I mean an actual wooden play structure that the therapist had to climb up after her to help coach her down. And anyone who knows Avarie knows that there is no negotiating or distracting her. That child is going to do whatever she wants to do and when she wants to do it. If you don't give in to her demands then you deal with the tantrum and the glare! So we had both because mommy just doesn't do the give in thing. It was amazing to watch her be a little girl today. She had so much fun. They actually don't plan on doing physical therapy with her after her evaluation today. They think she just needs some time and she will do fine on her own. I am not enthusiastic about that evaluation, I would like her to have a safe place to go to and have them help her work on her walking technique. She walks with her legs about a foot apart and very straight legged. They said with budget cuts that they just don't have the room to do too much with her. I plan on asking for a second opinion from Emanuel. I miss them all anyway, so this will be a good excuse to get us over there.
Life at home has been difficult, but is getting better. Its amazing how much this last year has impacted our family. Its been in ways that I didn't even realize until we were all living back under one roof again. Its getting better, life is starting to stabilize. I love that word Stabilize, its a nice place to be. Now if we can just stay there.
Craig found a job today. He has been out of work since February. He is so excited to go back to work. He loves his children, but he just does not have the patience to deal with the whining all day long.
The kids are excited to start school. Mommy is REALLLLLLLY excited for them to start school. I am also going to be starting school, just one class for right now. I'm scared to do it, I'm not sure how I am going to fit it in, but I have wanted to go back to school for awhile now and its time to start. I guess I will have to reschedule my nervous breakdown. There's just too much to do right now and in the near future to do that. In case your confused on that, I have joked, but been a little serious too that when this whole ordeal was over I was going to have a nervous breakdown. I have had it planned, it was suppose to start on Avarie's day 100 of post transplant follow up care. That is when she is suppose to be out of the woods and be better, we are at almost day 70. There is just no way that I can allow myself my little break down in 30 days from now, darn I'll have to plan for next year sometime. Maybe I'll have money for Hawaii by then. I've never been and when I get really stressed out that is where I mentally go. I picture myself on a warm beach, it helps me relax. Its where if I had my choice I would have my breakdown. Most likely it will be me in my room telling everyone to let me sleep in 10 more minutes. I guess that will have to do for now.
One last note, I will probably blog about this again and again, but please with school starting back if your children are sick at all, please do not send them to school! Avarie has had all of her vaccines since birth completely wiped out and does not have a functioning immune system. The little bit of immune system she has we are suppressing with drugs to keep it from attacking her body. Any sickness that she gets could be life threatening. So with this swine flu and extra bad regular flu season they are expecting, I am paranoid. She will be vaccinated for both, but the swine flu vaccine will not be ready until mid October, so we have until then to worry. So please if your child is sick AT ALL do not send them to school or take them to church. We have another little girl in our ward that also has Leukemia. She is still undergoing chemo, so she has a compromised immune system too. Please do not go to church with any kind of cough and please be fever free for 48 hours before going. The simple act of staying at home when your sick could save our children's lives. They have undergone sooooo much this last year and I am hoping that people will be extra cautious with such a scary virus going around this year. Avarie and Grace have survived too much to have to try to survive Swine Flu too. OK that was my vent and I'm sorry but I will probably do it again. I am just soooooooooooo scared and a little paranoid about this darn flu.
Oh, one last note. I won't have any new pictures or videos for awhile unless someone else takes them. My sweet little boy tried to take a picture and dropped my camera and broke it. I will try to get my sister in law to take some pics every once in awhile so that everyone can see how well she is doing, rather than just hear about it.

Getting Stronger All the Time, "Check me out"

Avarie is continuing to do really well. Her biopsy results for the graft vs. host came back today as negative. That is great news, we finally figured out what is causing all her tummy pain and diarrhea, it is our infamous battle with C-Dif. GRRRR! I started suspecting that last Thursday night, her poo started to look a certain look that I have become familiar with, so I took a sample in on Friday and results came back today, Positive! So back on Flagyl we go.
Avarie is continuing to get really strong, she is walking holding on to almost anything, she definitely still needs a lot of physical therapy help her strengthen her legs and learn to rewalk correctly. I'm going to discuss it with the Dr's tomorrow. I would really like her to be back in Physical Therapy Rehab over at Emanuel, but right now she is just not allowed to be around people and we have to be so careful with germs, so thats just not the best option for her at the moment. But don't worry Emanuel, we'll be back soon. She is doing so great, she can't wait to come and see all her friends there.
I've attached a little video of her cruising around, and of course there is one of Avarie's famous melt downs at the end of the video. She has been so sweet the last several months, with only meltdowns when there is high anxiety for her. The last several days have been almost constant meltdowns. This is the longest she has lived at home since the end of September and I think having to deal with the whole family dynamic and not be the center of everyones attention is wearing on her a little and having to share and deal with annoying little brothers that want to try to ride her like a horse doesn't help. She's just too darn cute crawling around on the floor, he just can't help himself he wants to ride her. At least he's not smacking and throwing things at her anymore, or well at least not as much.
So we are just hanging out and being bored together. It is nice to all be together, but oh my I can't wait for school to start again and get these kids out of the house and on a normal routine again. That word normal makes me laugh, but I know its still possible.

We have received preliminary results on Avarie's Transplant. They have so far tested 20 cells and all 20 cells came back XY Chromosomes, those are male cells. So Avarie's blood is male, that means that the transplant was a SUCCESS.
I have honestly been preparing myself and telling everyone that I don't think it worked. I have been preparing myself for it to be a failure so that I wasn't devastated when or if word came that it was her marrow in her. So far it looks like a complete success and we are exstatic.
I have realized that a lot of people don't understand exactly what have male blood means, or how the transplant works exactly, so just incase you are one of those I will explain it. We gave Avarie very strong chemo's that killed her bone marrow. Your bone marrow is located inside of your bones and it is what makes all of your blood cells. You have many, many types of blood cells, but the main ones are your red blood cells, which carry oxygen to your body, your white blood cells which are your immune fighters and your platelets which are your blood clotters. We killed the marrow which is the manufacture of those things. We then gave her stem cells from a new person. Stem cells are the building blocks of everything. When we put them into her and her marrow was completely gone, the new stem cells traveled to where her bone marrow was suppose to be and started growing there. Why or how they get there is a mystery to me, but somehow they know exactly where to go and what to do. It took them a while to regrow, but they did grow. The donor cells are now her new bone marrow. They are her new blood manufacturer in her body. So finding male blood in her means that she has a male manufacturer in her. She will always have this marrow, someone asked me that. She will always have male blood. There needs to be a CSI or Law in Order show made after something like that. It would be a really good twist for one of those shows.
We don't have the official results, but the chances that they took 20 cells and all came back male is a really good sign.
Avarie is starting to have some problems. She is losing weight and not tolerating food. She has been having diarrhea and a lot of tummy aches and then today has started throwing up. We took her in and they are scheduling her for a GI (gastro intestinal) test. They are going to take a scope down through her mouth and up through her bottom to look to see if she is having Graft vs. Host in her gut.
She seems to have gotten worse tonight. She got sick tonight again and has been asleep every since. I'm not sure if we'll be able to get her to keep anything down tonight. She has kept nothing down today, but they gave her a little hydration today at the Dr's office so I know she's ok for the moment, but I'm worried about how she'll do through the night tonight. If we can't get her to keep anything down tonight we'll be calling the Dr's in the morning and possibly take her in tomorrow to be admitted until we get this all figured out. The solution to having graft vs host, is to put her on steroids. I can't even begin to tell you how happy that makes me. No one is a nice person on steroids, but a 4 year old, its never a pretty situation.
I tried to upload a video her with this post of Avarie today. We had the nurse give her some ativan at the appointment because she had to have a dressing change on her PIC line in her arm today. It is always very traumatic for her, so we give her some ativan to help calm her down and ease her anxieties. I think she had a little too much though. She was halucinating for hours after. It is so funny. She was playing with this blue plastic throw up bag for hours. She kept seeing things in there and trying to get them out. We took the funniest little video, which honestly is kind of sad too, of her trying to save the gorilla in the throw up bag. Unfortunately, according to her he melted before she got him out. Its funny to watch her, but sad to see your child like that too. But we definitely had a good laugh today.