What a Day!

Ok my day started off pretty relaxed as I has anticipated the day to get "busy" in the afternoon. It definitely did not go as planned but still was very productive. After I showered and got the kids out of the bath I planned on making some phone calls and emails while we were doing school today.
I received an email this morning stating that Avrianna's lab from last week did indeed show antibodies for the Parvo/fifth disease so that means her Aplastic Anemic Crash was due to that bug. We now don't have to worry about her ever getting it as she already got it, that is a big relief. I then called central scheduling to make a consult appt with the surgeon that would be doing Avrianna's gall bladder and spleen removal. I sat on constant ignore (hold) for ever and then the nurse came back on stating:

Nurse -- I see you live in Neenah
Me -- Yes I do
Nurse -- well I just called the Fox Valley Children's Hospital where Dr. Oldham is doing clinic right now, he said he would wait for you if you could get there in the next 15 minutes
Me-- Are you serious, please tell him we WILL be there

Ok when does that ever happen....getting into not only see a specialist the same day but a surgeon. WOW! He was very nice and answered some of the questions I still had for both procedures. I feel alittle better not only with her surgeries but with some of Dan's issues too. Some of you may know but the blood disorder that Avrianna has was inherited from her father. He had a more severe case when he was an infant but with his surgery happening years ago and him not wanting to go into a doctor when he should I got some of those questions answered too. She needs to get some additional immunizations done which are scheduled for next week and then they are requesting another ultrasound of her abdomen (also being done next week) before the surgery. I will be calling in the next few days to see when we can schedule both the gall bladder and probably a complete spleen removal. If they are both done as complete organ removals it can be done laproscopically ie: less scaring, less recovery, but alittle longer procedure time, and higher chance of post spleenectomy spesis (so I will be doing some more research and talking more to Dr Kasper before I TOTALLY make up my mind).
After that appt since we were already at Theda Clark I went up to Rehab to see if they could get Danny in earlier for PT so we didn't have to come back. Again wow, they could get him in. Then realizing I would be late to get back home for speech therapy through the school I called them and asked if we could due a field trip to the school for therapy today as it is right down the street from Theda. They said that would be great! Mr. Scott and Ms Maria sang him songs and helped Danny paint his own paper apple. Danny was very interested in what they were doing and it was great to see Danny's eyes follow what they were doing. Make me wonder how much he can REALLY see. It was fun! WOW - now we are batting 3 for 3 that normally doesn't happen to me, if one thing in the day gets off then it's a snow ball running down hill, but NOT today.
Just as that was getting over with I received a call from Danny's Respiratory therapist that the cough assist is in and he would like to drop it off, GREAT! I'm on the way home. I just had to stop in and get my new glasses and I then I would him at the house. Another big piece of equipment but if it helps. I didn't see any discomfort from Danny when we tried it out on him but again I didn't see it helping him cough either. So we'll see.Danny is doing well....I think all of the junk is stemming from allergies as he doesn't act like he has a cold. I think he just accummulates all his sucretions and then when he gets over loaded he doesn't know what to do with it. Most of today he was prefect. It's probably because we got this new machine here and he knows it so he's going to be on his best behavior, what a stinker, but if just having it my house wards off all evil (quote Dr. K) then let it be. LOL
I also called and Danny's new wheelchair and floor sitter are in, except for the head rest. Once all the pieces are in Mike will bring them out and Danny will be riding around in his new wheels, Yay! I'm so excited as the old chair just isn't doing what it should anymore. I will take pictures of him in his new wheels.
Unfortunately with the unplanned hectic day I was unable to go out and watch the blasting for the basement, but it was a very productive day and it amazingly went VERY smoothly. So we stopped at the golden arches for a happy meal for Ms Avrianna, a shake Danny can sneak some tastes, and a mocha coffee for mom and we're going to sit and relax the evening way.
Monday is our first homestudy home visit with the new adoption agency. I am so excited that our adoption journey is starting again and on a good note. Another strange small world thing. This weekend I met a women who comes from the same country and has the same name the lil girl had that we tried adopting this spring. Just made me think about her again!
I hope all is well with you. Take care!

Update Finally

Well it's been awhile so warning this is a long post...time flies I guess! Let's see where to begin....Saturday Dan turned another year older so we gave him a call at the race track to wish him a happy birthday and good luck racing for the day, yeah September is big for our family with both our birthdays and our anniversary in the beginning of the month. Saturday the kids and I went to the local fire station as they had a safety thing going on. The weather was great and the kids has a nice time. Avrianna was so excited she got to go into a smoke house and she got to look through special binoculars that allow you to see in smoke. She said it was really hot in there and very smokey.
Sunday Dan came home from Racing in Michigan. It was a great time he said and he thinks next time we all should go as it was a very nice facility to be at. I believe the WIR team took place with in the top ten. Dan was able to get to know some of the "regular" guys from the race track better and he said he was happy he went. They took an AWESOME picture of the car taking off at the line (front wheels up and the rear tires wrinkled from the force) I am going to try and post it on here later.
Monday Danny had his first day of water therapy and he LOVED it! He was all smiles in the water. It's so good to get him back in the water, as he seems to "do" more in there. I really like getting him in warm water as there and only there is he gravity free so his little body can take a break and just float, plus he is off his butt for awhile. It's got to be uncomfortable to be on your butt all the time! I also got the lab result back that he had a while back. Most everything looks good. His protein was better then last, his seizure meds were at a good level, but the med that counter acts the seizure meds side effects were low. So I am increasing that one to a three time a day med too and then we are going to redo labs in a couple of weeks. If the levels are not where they should be Danny could get kidney/bladder stones and we DON'T want that. YIKES!
Today....Tuesday, what a day. First I had to get up EARLY to be to a meeting in Milwaukee I was late at getting out the door as lil man felt the need NOT to pee over night or when he got up so after alot of pleading with him I realized he wasn't going to do it on his own, argh, of all days the one I have to be somewhere. Well after that was taken care of off on the road we ALL went. Did I mention how much I hate driving in Milwaukee, I am soooooo not a big city girl. I like being able to get where I'm going in a matter of minutes, but not in Milwaukee I got stuck MILES away at very slow creep due to....what I don't know. So I was late....I hate being late, I felt like a putz! But the meeting went on and the kids were AWESOME!! I couldn't have hoped for them to be that good, WAY TO GO! After the meeting we were off to the Children's Hospital for a routine follow-up with Hematology for Ms Avrianna. I was totally blindsided with this one...I went in thinking this would be a 5 minute look at her and see you in a year. NOPE!!!!! Well the doctor feels strongly that her gall bladder NEEDS to be removed and while we are in there remove the inevitable spleen too. WOW didn't see that one coming, I knew it was in her future but didn't think NOW. Boy this is a whole new ball game, Avrianna surgery? So after the surgery she will be even more susceptible to infection and bacteria stuff as she will no longer the the "cleaning" organ to help her out. Even with it now it is hard on her but it still works to some degree. The doctor wanted to get labs to see how she is doing as her color was "off" and with the yellowing of the eyes. Plus he wanted to pinpoint if in fact her crisis this spring was brought on by the pravo virus or if something else triggered it. Avrianna usually gets a finger poke and out the door we go, not this time. I think the whole floor heard her scream! Boy for a lil girl she is sooooo strong. Trying to hold her down and keep her arm straight was definitely a challenge. The lab tech stated that she is ranking Avrianna on her top 5 list of deafening screams, yeah this is what we get to look forward too. She definitely puts the lab and surgery crap into perspective for me as Danny for the most part just goes with the flow, no screaming, no drama so she makes up for what he can't communicate. So tomorrow I will get the results of her tests and try to start the the scheduling process. WOW two really HUGE surgeries back to back one on each. How in the heck am I going to swing this? Well as you all know I am one for a challenge and I'm always on my game when I have multiple pots boiling on the fire. I'm sure it will all work out but right now alittle overwhelmed with processing it myself.
Tonight we had a meet and greet with most of the sub contractors working on our home. It was awesome!! I feel bad though as I wasn't able to talk with everyone as much as I would have liked, time just flew by, but they all know my face now(good or bad, heehee). I was just floored with everyone and their reaction to my family...most of them even said HI to Danny, that just warms my heart. For you all that walk in my shoes you know how big it is for complete strangers to acknowledge our kids. That means the world to me. I know some were uneasy asking me about Danny, but please don't, I love talking about my kids! I hope for the ones that are now following our story this site can bridge the unsettling feeling and you can see for yourself it's OK to ask. THANKS! To all the came tonight to help start this project off. Today they were out on the land starting to prep it for blasting the basement (we are on a rock bed). I so can't wait to see that....something you don't see everyday :)
Wow alot to process. I think (hope) that is it for now. I will definitely post more often as I guess I have too much stuff going on! Heehee. Please check out Matt's site as he is still in the hospital fighting off some respiratory bug and also Ryan's as I found out this afternoon he was admitted too! ARGH
Take care and thanks for thinking of us!