Finally updating

Sorry for the lack of updates from us. I had really thought I would have more time to blog once school began but I've been catching up on paperwork and projects around here. Avrianna is officially a 3rd grader. WOW! One week under her belt and all is good. She's adjusting to a new class, new teacher, and new classmates very well. Danny will be starting up his therapies this week I'm very excited to get back into the routine for Danny. Enough sluffing off, LOL. Danny will continue to get Speech, OT, PT, Vision, and the teacher all done here at the house. I can't wait for them all to see him and all the changing he's gone through this summer. Once again the summer was a rough road for The Osero's, but we seem to been on the right track........for now. The only real hiccups around here are.
Danny's right hip is now completely dislocating itself multiple times a day, sigh. It's very frustrating! A dislocated hip causes him some significant discomfort when it's out, but he seems to calm down once I put it back in, NOT one of my favorite things in the world to do ~ I can tell you that. Danny still isn't totally back to his normal feeding regimen but we are always up new regimens. He still has some blood clots that come out when I vent his tummy so I know things are still not up to par in his GI tract yet. Tomorrow he has a GI follow up appt here in Fox Valley so it'll be nice to get the doctors perspective.
Avrianna had three more cavities filled in her teeth. Once again they came in with the cavities as her teeth are very pitted, grrrrr. I was really hoping she wouldn't have my teeth. She even managed to get to cavity in one of her teeth that already was sealed. I'm VERY proud of her as she had all three cavities filled without gas or Novocain. No tears and No anxiety.....so NOT her mother! She is going to be seeing an orthodontist next week for braces. She has a severe lower under bite, upper over bite, and her pallet is quite high. GO figure! I'm not sure how it all works but I hear today's day n age is alot different when it comes to bracing teeth. We'll see where this road takes us. At least, for now, she is excited to have braces. But I don't think it will last long, heehee.
Dan performed open heart surgery on "Big Red" this last week. So now the big red truck should run better and hopefully longer. His excuse is that now Avrianna needs braces so he has to keep it running....LOL. I think it's because he can't get himself into getting rid of "her". They've been through alot you know, there's a history.
I had to go on oral baclofen for my MS. My legs n feet were getting pretty spastic, to where my right leg is turned in when I walk. Dan always asks if my hip hurts as it looks like it would walking they way I do now. I notice I walk differently but I can't say it hurts....it's more uncomfortable at night when I'm laying in bed trying to unwind n relax and my leg muscles are still tight. Grrrrr! I just keep adding more notches to my .... "that's what Danny goes through" experiences, sigh
Today we had a fun art project day .... out came the paints and we all got dirty. We did hand prints making bats, pumpkins, and leaves. Then off with the socks to make ghosts. I can't believe how well Danny did with paint in his hands, Aleana actually got great hand prints of him. That is no easy task! Lil Man definitely expressed his lack of enthusiasm a few minutes after the paint hit his hands, LOL. The boy doesn't like to be messy, but he'll get over it.

Wrapping up

Danny just had a 48 hour EEG done as the doctors feel he's "pain" might be seizure episodes. I hope they got enough information so we know what's going on with Lil Man on a daily basis. They want me to increase his meds once again, but I'm now in the prove it mode. His liver functions have gotten all out of whack with these meds before so I'm not too excited about increasing them unless we come up with some proof and possibly other alternatives. My fear is if we start screwing around with his liver functions now and if he should need to be back on TPN after his spinal fusion/rods in May we've just added fuel to the fire as TPN also effects the liver. UGH!!!
Here is his dread locks of wires, all 25 glue to his head with glue that's "better then super glue". When they flatten his hair up you really can see how small is head really is. The top is so small because his brain doesn't grow so there is nothing pushing out the skull. I have infant hats that fit!

This time around they gave him a bandana to wear around the bandage holding all the wires in place. Now instead of getting the looks as if he had brain surgery they think he's had chemo. I just want to have a sign out saying there are wires glued to his head .... that's it no biggy! Here he is so cool........ready for Harley ride, I think.

After washing his hair of all the glue....well I thought I got it out. It still looks as if I dipped his head in white paint. I'm going to try to wash it tomorrow with baby oil and see if that helps get the glue out, UGH!

We had Avrianna's conferences with her teacher this week. She is doing so well and just shining in school. I'm so proud of her! Her teacher says she's a model student and that she a joy to have in class. Boy does she have them all fooled, LOL. I can't express enough how happy I am that she is not only doing so well but enjoying school. She is also excelling in her piano classes. I'm in awe of the music she can play and how awesome it sounds. Danny just LOVES listening to her play so I think that's an incentive for her :) She's a great BIG sister!!!
It's approx. 72 hours and we'll be in the sunny state for some much needed R&R time for the Osero's. The bags are packed, the RV is almost ready, and we just have to get the odds n ends things together on Friday. I'm to the point with packing up Danny's equipment and supplies up where we need wait till the day we leave as I use it daily. It's been a year since we've been able to get down there and we ALL are excited to get there. It is going to be so nice to have no plans, no doctor visits, no therapy, no nursing, no contractors......just US. With the economy we've decided to hold on to our condo and see if it's a better idea to just rent it out once in awhile and that way we'll always have a place to go to.
Dan's getting ready for racing as when we get back he will be in full force. So the car is getting it's tweeks and repairs done so once the track is open he'll be ready, set, go.
Please don't forget to pledge dontations to the MS walk I'm doing in April. Ever little bit helps so please support the walk and ME. Click on the link to the left of the blog page and that will get you to my personal page. THANK YOU!

Happy Birthday!

So as a birthday/anniversary present to US....I surprised Dan with bobble heads of us :) I thought it was a neat idea...seeing the kids had a head bust done, that we should have something too. They are cool!! These were also done by the same local artist that did the head busts...Tim Brunn. Thanks Tim!!
My birthday was Friday and Dan's birthday is today. So September is a busy month for us :) Dan took off Friday afternoon to go up to Tomahawkto see the Harley festivities, hang out with his buddies, and cut some fire wood. I can't believe it's been cold enough in the morning that I can have a fire, so I'm really excited once we get the wood here to have my first fire in the fireplace. I LOVE wood burning fires, snap crackle pop and the smell in the house. SNIFF!! So we'll celebrate our days tonight. Well have a roast in the smoker and I think the kids n I will bake a cake. Well see how ambitious I feel later, heehee.
I decided to take the kids out shopping for awhile yesterday. I was alil intimidated taking Lil man out in public, but it went well. Check that off the list of firsts....New trache out shopping, CHECK! Boy did we find the deals :) I LOVE shopping when that happens. We were out for about 4 hours and then Danny had ENOUGH and wanted to be home out of his chair, NOW. Avrianna must have been wiped from all the shopping and playing yesterday as she is STILL sleeping, heehee.
I was considering getting a cleaning service to clean the new house but decided to go out and get some supplies and do it myself (well with my mother's help). The house still has dust on the walls, trim and vents, the floors are bad, and there are sticker marks on the windows. I think the builder got ripped as they got a cleaning service to tiddy up before the parade, hummmm so not up to MY standards. So it just needs a good DEEP clean and then it shouldn't be too bad to keep maintained, you all know me OCD is kicking in.
Avrianna is making new friends and LOVING it. She now has a friend in her class that lives just around the corner from us. This is great! The girls have played a few times and I think it will be a wonderful relationship that will last forever. They are two peas in a pod :) Avrianna everyday asks if she can call and have her friend over. I told her you don't want her to get sick of you, heehee. I'm so glad she is adjusting well to school and enjoying it. Avrianna started Brownie's so she's excited about that too. I am trying to get her in the Neenah Swim Team as she LOVES to swim and she is so good at it. I think it would be good to challenge her with her abilities (much like school) and get her out competing. I haven't heard from them as of yet, but hoping I will soon. I got a letter in the mail the other day and they are keeping Avrianna in second grade. I'm excited about that!
Danny is doing AWESOME! As of Friday he has been off the TPN and he is tolerating his formula great. So tomorrow, after Michael (his home nurse) draws the labs, we are going to pull the PICC line. I can't tell you how happy I am about that! I was more scared of the PICC line then the trache. So NO MORE PICC line!!!! The next step will be getting Danny to tolerate a faster rate so he can be off the pump more. We are in no real rush so it will be a work in progress, Danny's the boss :) Then we will have to talk with a dietitian to see what will be Danny's formula that he will be ending up on, whether we go back to Promote or if there is something else out there that has less calories but the nutrients that he needs. He is still gaining weight, but I think it was because for awhile there, at the end, he was actually being feed double with the formula and TPN. He is at 64 lbs now, WOW!
Stop by our lil friend Moriah's site as she has some MAJOR set backs this week and he is in critical condition. Send many prayers and thoughts their way. What an amazing family! I'm so glad to be included on their journey. BLUE RIBBONS everyone!!
Thanks for stopping by and checking up on us. Please let us know you were here, as we LOVE to hear from you too.

Right track

Things around here are starting to get on the right track. I have most of the house decorated and organized, now I can sleep better, LOL. I still have to totally empty out the other house but most of the things there will be going to GW.
Danny is doing great! I have gotten alot of smiles today and the last two days he has been mostly out of bed, woohoo, with tolerating well.....BONUS! Thought I would share some pics Chilln out in the kitchen

Gotta LOVE that face!!!! He and I were having a conversation here. It just makes me smile to hear his voice. I was so afraid of never hearing him again, but once again Danny shows us all he is in charge. What independence!! I LOVE YOU BUDDY

And I'm working him hard here at home......yeap in his stander once again! He stood in it for 50 minutes and no fuss. Way to go!

Today Danny got a visit from Ms Maria (speech from last year)....it was so nice to see her. Thanks for stopping by! We were sad as she told us she will not be Danny's speech therapist this year. Danny did really well with Ms Maria so I'm really bummed that once again speech has changed. So far Danny has had a new speech therapist every year. At least they are going for consistency, right? We are going to miss you Ms Maria!!!! :( Tomorrow some of Danny's therapist are coming to see the house and see lil man so we can start a schedule for this year. I think we are going to have alot of new faces this year.

Avrianna is LOVING school and riding the bus. She has been waking up every day early (all by herself) and can't wait till the bus picks her up. Today she did the bus thing all by herself. She is very proud of her new found independence :) She comes home every day does her homework, tells us about her day, and asks "how much longer before tomorrow?". I'm very excited for her!

My baby is in there!!!!!! :)After her homework she goes for a dip in the pool

Today I went in for a follow-up appt with my Neurologist about my new symptoms. He did a few tests but he felt that until the symptoms disrupt my daily functions (aka falling, or blind spots, or so weak I can't get out of bed) that I should wait these flare up out and see how it does. My vision is off but I don't have any blind spots, I can't walk fast or I'll trip over my own feet, and my ability to do certain things has decreased. BUT I'm still moving on and pulling forward. Some days are harder then others but right now it's ok. I'm amazed at how fast everything has come on.....3 months ago I thought I pinched a nerve in my back to all of this. I did go and FINALLY get a hair cut! Here's the new do