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!
Every therapist has new tricks
12 hours ago