Danny's School Day

Jan 5th Danny went on a "Field trip" to his School, Coolidge Elementary...for the first time :)
Danny even got to see the Principle :) ~ It's was so nice so got to see him. We talk about him to her at the IEP's but she's never met him. Leave it to my kid to go to the Principle's office on the first day, LOL.
Danny with his Teacher's ~ Mrs. Bowers on the left, his CDL teacher who comes out the house to work with him and Mrs Weyenberg the 2nd grade teacher.
No play time for Danny.....they worked him hard. Here he is in the computer lab. Where PT ~Ms Nicole and ST ~ Ms Cathy joined with us
Danny checking out the smart board in his classroom. While he was introduced to his classmates. There are 6 other students in his room.
Even PT ~ Ms Karen came by to see Danny shine in school. She helped him do a project.
TOO Cute ~
The reaction I got after I asked Danny if he liked going to school :)
Visiting the school was great! I really enjoyed seeing Danny's reaction to the unusual surroundings. I really do think he had a good time :) I am so glad we went. It also confirmed that (even if he could) the school setting wouldn't be the right one for him. Not that they aren't doing a great job there, I just don't see Danny thriving there. He can absorb/learn so much more in his one on one that he gets here ALL DAY at home.

Back to the "Schedule"

Well school is back in session and we are adjusting to our busy schedules of therapies, swim, school, and programs. I am very excited to see what great things this year is going to bring to the Osero Household. Both kids have great teachers/therapist....and of course Mom, heehee.

The kids School Pictures this year! WOW ~ did they grow up

Yesterday Danny had a WONDERFUL day with PT Peter. Here is a video of my Lil Man working so hard. Not only is he standing tall in his stander, he's holding and moving his head, tracking things, swallowing right, following what we ask of him to do, and trying to communicate....some may not see the BIG picture and think this to be nothing much, but this was a GREAT day for Danny :)

Here's alil video of Avrianna and her friends....Jammin away to Wii Dance. You can't help but smile watching them. They LOVE the Wii!!

It's that time of year and once again Dan is out hunting trying to find that Big score.....after 8 yrs of waiting for a bear license in WI he has his opportunity to get a Bear. Here is the HUGE beast that has been hanging around his stand. I told him he'd better be a good shot, cuz he's going to be an appetizer to this thing. AMAZING!! and Crazy that he wants to go in the woods when this Teddy Bear is there....NO WAY!

Last nite The Fox Valley Wave Swim started for the season. We are back in the swim of things. She will be swimming 4 days a week for 75 minutes and she will be participating in 6 different swim Meets throughout WI between Nov - Feb (Meets usually consist of Sat & Sun and being in the water by 8am -about 11)

We FINALLY got a watermelon ripe. We JUST picked this 2 days ago ~ this is the 3rd one we've picked but the first one that was ripe enough to eat. Not sure we are going to do Watermelons again. BUT boy is it delicious!!

Our Tomato canning stash from this years harvest.....BUT a mental note IS ~ Do NOT trust Dan's sense of "heat" as ALL OF THESE ARE TOO HOT for us to eat. The recipe has now been rewritten and there will be NO MORE crushed red peppers put in. YIKES!!

It's a good thing that we harvested everything out of our garden....this morning there was frost as the temps were in the low 30's last nite. Um BRrrrrrrrrr ~ I'm not ready for this!!

Next week is going to be a busy one medically ~ per say....
First we have an appt to see Danny Neurologist and talk about what's been going on with Danny. He's FOREVER changing his neuroligical status and with the last EEG showing no active seizure activity during these episodes we have to figure out what's going on during these and see if they are causing more damage and/or if they can be treated. My gut says not so many good things are happening with him as they are coming on more frequently and intense :( Despite his smile and laugh these are NOT FUN! More poor bug ~ even the neurologist stated how heartbreaking it was to watch Danny in this video ;(

Straight from that appt is down to CHOW for a 4 day stay to get him set up on the vent. So Dan will be on Avrianna duty....god help him ~ LOL. I'm anxious about the vent, I'm not going to lie. I'm all for helping Danny's and giving him a better quality of life, but it's just scary step and I'm sure it's going to be very frustrating to get the vent to play nice with Danny. NOTHING goes smoothly so I'm already anticipating a struggle :( But we will get through this too, one day at a time, I'm sure of it!
Thanks for stopping by and checking on us!!

Girl Scout sleepover N Stuff

Thursday nite into Friday we threw a Mom n Me Girl Scout Sleepover. Great times!! Everyone got along, and it looked like everyone had a great time.
Our sleeping area for the nite :) This is in the back of our yard.Pool time !!
Our Troop Leader.....she's great! Thanks Michelle for all that you do with our girls
The Girls! What a great group we have :)
Some of The Mom's
We had projects and activities planned but all they wanted to do was SWIM!Danny had to put on his charm seeing there were many pretty girls here....my flirt :)At the bon fire roasting smores!
All tuckered out and sleeping. I'm amazed that 11pm and they were all pretty much out. Gotta love all the pool time :)
Before 7am and they are already back in the pool...........Brrrrrrrrrr!
Our Garden is growing like wild fire once again this year. I've already canned 4 quarts and 8 pints of tomato sauce and the tomatoes are just starting to turn red, holy tomotoes :)

The zucchini well .........

Tomorrow is a fun filled day at CHOW for appts with Lil Man. First is xrays of Danny's Spine and Hips then to chat with Ortho on the "findings" of the xrays. My gut says we are going to see some issues with Danny's left hip now but the pic

tures will tell. I think Danny sprouted too so we'll have to see if he is due for another growth on his VEPTR rods. Danny really likes to keep Ortho busy. After ortho we head to Trache/Vent clinic, another interesting appt. Not only because it's about a 2 hour appt (we see about 5 docs/nurses, it's great they come to us) but we've been dancing with the putting Danny on a vent at nite so now that the Pulm Dr and I will be face to face we'll be making some big decisions I'm sure of it. UGH ~ I feel sick already!! I made an appt this morning for next week...Danny will be having another 48 hours EEG done. Then when we have our appt with Neuro next month we can talk about the findings on that with him. Let the appts begin!

Avrianna has been a busy bee making more Tie Dye things....she's getting really good ~ My lil Hippie!

Last weekend I had an Eye Candi Open House party here at the house....and despite the crappy turn out we had a nice time. I think we'll have to do another one in the fall when everyone istn' so busy. Of course my buys!! If interested in checking out her stuff click HERE

Danny is enjoying pool time ~ it's been so brutally hot here so pool time is a MUST :) We even have Danny's Physical therapist doing aqua therapy now too. LOVE IT!!

Well school is approaching us...wow, where did the summer go? Registration for Danny is this week. I'm interested to see how this year is going to play out, as the Special Ed teacher is no longer there so there will be a new one. I'm hoping that the school district gets a teacher JUST for the home bound kids, we'll see...... change might be good. I just HOPE that his therapists stay the same! Next week Ms Avrianna has her registration and pictures. We already have all her school supplies and her outfit picked out. She's really excited to see who her teacher is going to be this year.

Here is Danny working on his new iPad2 mirrored on the TV and with the switch interface ~

Yesterday I put together a block party cook out and it was a hit! I'm glad we had such a nice turn out. Watch a bunch of great neighbors we have!! Party Party Party!!

Thanks for stopping by to check in on us!!

Don't forget to pledge a donation in honor of Avrianna n Danny for our Make A Wish Walk on Sept. 13th 2011. Please Click HERE to go to our team page and PLEDGE now. We THANK YOU for helping my WISHES come true with children that have life threatening condition.

We Are Here

Boy has the time slipped away from us :) So I have some of updating to do.

We had Whitney, cousin from Tomahawk, over for additional week and we had a BLAST with her here. I surprised the girls and took them to Noah's Ark last Thursday. I told them we were running errands for the day BUT when we ended up in Wisconsin Dells the over 2 hour ride wasn't so bad, lol. I was alil nervous about the rides, as I know I'm not as young as I used to be plus both girls had NEVER been on a water slide before. Of course they picked one of the biggest ones to go on first....they were very quiet while waiting in line going up multiple flights of stairs and then they had to tell me, when we were almost to the top, that they had butterflies in their tummies. I could tell they were nervous, heehee, and the noises they made going down the dark tunneled drop to now where confirmed they weren't too sure.....UNTIL it was over the they BOTH yelled out "THAT WAS AWESOME". Right there and then I I knew I was in trouble, YIKES! We ended up going on ALL but 3 of the rides and we had the best time. Thankfully the girls didn't make the weight requirement for the looped water slide, and they weren't into the two that were straight drops......phew ~ I will live to see another day, LOL. Dan and Danny bonded for the day while us girls played :)
The next day we had the neighbor kids over for a sleep over so we ended up having 5 kids in the house that night. The more the merrier I always say!! Luckily they weren't night owls that evening. I put a movie in around 9:30 for them and when I checked on them at 10:15 everyone was out.
On Tuesday Danny, his nurse, and I went down to CHOW for trache/vent clinic and post op from the VEPTR revision. The whole day went well for Danny. He was a trooper for the road trip and he gets GOLD stars for all the appts. I love having great appts, but on the other hand it's alot of work to get him there early in the morning for them to say he is great no changes need to be done. After his appt we went to the The Cheesecake Factory, oh yah it was soooo yummy :0).
Wednesday was Danny's last day of TPN, Yahoo! His gut is tolerating G-tube feeds once again and he's having BM's all on his own. He's not back to what he used to be but he's doing well, baby steps. So after the labs I took on Thursday came back all looking well his nurse Friday pulled the PICC line. Even though the PICC is the best thing for him to have for blood draws and quick intervention is was wonderful to pull it BEFORE an infection started. Unfortunately yesterday afternoon he started the tears and holding his breath when crying so I've upped his pain meds and have an email into his doc. Of course this all happens once again on a weekend but of all things the day after we pull the PICC line. I'm just sick to my stomach wondering if it's another hardware issue. GOD I hope not...I don't think he'll be having the hardware in for long if it is. We can NOT go through another hardware mishap/failure. We'll see what happens in the next few days and I'll keep you updated.
When we got home from the day hanging out at CHOW, to my surprise, the second photo shoot we'd done with Nicci at Little Foot Photography was in the mail. I opened it up immediately and I'm SO happy with the pictures this time around. They are AMAZING! I already have my portrait on order. I can't wait to put it up on the wall. Here are my favorites ~
True LOVE ~ BFF's
Her eyes are stunning ~ she's SO beautiful
Are there any words for this? I just cried!I will post more later as this computer isn't liking the idea of downloading pictures.
I've been dealing with a headache and some spasticity issues the last week which have been oh so much fun to function with, Grrrrr. But I'm trying to keep on keeping on with it and not let it drag me down too much. I have a Neuro appt in two weeks so I'll address it with her then and see what she has say about any relief. I'm not sure if it's a MS thing or my thyroid acting up as the symptoms I'm having can be connected with either. This is frustrating!
Unfortunately my computer died on me...it just went blank one day while working on it. So today I'm heading out to get a replacement. Until then I've been working on Dan's antique, LOL. It gets the job done but VERY SLOWLY, heehee.
I can't believe school is right around the corner (first day is the 1st of Sept.), but we, ok I am, so ready to get back into the swing of things. I am a proud mother of a Third and First grader, OMG where has the time gone. Both kids are registered and ready for the first day of school. Danny will continue to be "homebound" status, so that means the teacher and therapist will be coming to the house to work with him once a week. I can't wait to see them all again and show off how BIG Danny has gotten over the summer. I was hoping to have Lil Man start right away BUT with the new on set of pain I'm not too sure what is going to happen.
The garden continues to spit out ALOT of veggies ~ We've already pickled about 25 quarts of cucumbers and given so many away....so I can tell you we are NOT planting those next year, LOL. The corn is doing great, but we had a nasty wind storm 2 days ago that knocked it all over so I hope they haven't gotten ruined. I haven't gone out to the garden much as with all the rain it's a mucky mess and with the amount of mosquitoes around here, there's no way! Yeap I'm a wimp and not fan of them, LOL. So Dan has been the sole gardener.
The ABC show Extreme Home Makeover has been in our little town of Neenah, for the last week making an extreme home for a family here. It's AMAZING to see what happens when doing these homes, and how extreme the homes get from start to finish in a matter of only 7 days. Wow ~ the buzz was on in Neenah :) I can't wait to see what was filmed for the TV part of the show.
This week we have Dan's Dad and Claudia coming down to visit for a few days. Dan and his Dad have a conference
Thanks for stopping by to check on us ~ I hope to be more on the ball with my updates. I'm sure once school starts and I have more of "ME" time I will get back to posting more often :)

Clean Slate

Today is NEW day! Everything is going smoothly today :) Danny is still sleeping so either the shower yesterday stressed him out more then I thought or he is growing again (these kids just don't listen, heehee). The bus driver had changed the route already today to pick up Avrianna in front of our street and she got to ride the school bus. He is very nice and from the talk around he is an awesome bus driver, that makes me happy. She was SO EXCITED! I went to school anyways to chat with the teacher on my feelings about yesterday and Avrianna. We are ALL GOOD with that. I forgot I gave her the blog address so she already read what I put on here last night. She understands where I am coming from and I think it's a new "beginning" today. Then the principal wanted to talk with me in her office....oh the memories, heehee. She read the blog too. We had a wonderful conversation in her office and we are ALL now on the same page. I feel so much better today that we all know where each other are coming from. I'm very protective of Avrianna and I know her in & out so I tend to be alil over bearing when it comes to my kids. Yesterday was just an emotional day for me as it is. But today is NEW day.... we are pulling forward and moving ahead in a positive light!
Yesterday our family dog, Bailey, came home for the first time to the new house. I think she will do just fine we just need to keep her out of the pool and the retention pond (yuck).

I'M CRUSHED

I really started today off on a good note. I held my head high thinking I was doing the right thing and sending Avrianna to public schools. No matter how much I really wanted to home school I knew that right now I might not be able to give her what she needs. So off to school we went today. She was so excited! We went alil early so I could get her to her class room and get some of the ins n outs of the place. I was really feeling good about my decision when I left the building, alone. I felt she would get what I couldn't give her right now. I didn't even cry..... well maybe just alil.

I came home to a bunch of running around with my head cut off. I am really getting sick of running here, there and everywhere once I'm at home. This moving is getting OLD really fast. Once it's done it will be so nice, but right now I'm not liking it at all. I feel as if I'm running around in circles but not getting much done. UGH!

I finally had to just tell myself, ENOUGH and I gave lil man shower. THANK GOD, Michael was still here as the great lounge idea in the shower was a flop. It was so unsafe for lil man. I just sat and cried afterwards! I'm frustrated........I hate the fact I just can't pick up my baby boy and DO IT. I have to rely on slower equipment to help. Then when we put something in to "help" me out with him it doesn't work and makes it even more difficult. I'm so sad about it all. Why does he have to grow up and why can't I just do it anymore? All very good questions but I already know the answers, it's just hard for me to except. It didn't help that Avrianna had school today as it's another reminder that I can't do it. I did leave a message with my neurologist today to see if the MS symptoms I'm having warrant more treatment or to just ride them out, but I haven't heard back from them yet.

About 15 minutes after I got home from picking Avrianna up from school, well following the school bus...as she wanted to try the bus route for the ride home, I get a phone call from the principal already. Are you kidding me? Well it seems they are concerned that Avrianna is 6 and in 2nd grade already. They wanted me to drop her back to 1st grade because of her age. SERIOUSLY? She missed the cut off by only a month and half people. And she is smarter then some of the 3rd graders out there. Give her a chance to show you what she can do before calling the first day without assessing her. I am getting mixed answers and back pedaling now once I called them on their idea and went to administration. So now I'm on guard. My faith in the system is dwindling and I'm totally upset over it. The whole reason of us starting Homeschooling was cause the lack of faith I had in the school district and now I'm already getting crap the first day. They are not showing a good case for themselves to me as of now....I hope it improves and this is all a misunderstanding. Avrianna overheard my phone conversations and is now upset as she "Doesn't want to go back to 1st grade". GREAT! I feel terrible as our first experience is well short of good. I WILL pull her from the school district and home school if they are so set about putting her in 1st. How confusing for her.....the principals idea was to pull her out and put her in 1st grade tomorrow and if she shows she needs to be in 2nd the put her back, UM NO! Why am I thinking that would be a VERY bad idea to do to her instead of them? She maybe only 6 but she is VERY smart and she is a social butterfly (so they can stop the socializing act on me for homeschooling, I didn't do to bad AT ALL). I'm so disappointed already! What's wrong with this system? Did I make the right decision? She LOVED school so pulling her out to go back to home school her would be like pulling teeth EVERYDAY. She is going to stay in 2nd grade and after the schoolwide assessment they will get back to me about how she did. I'm sure she will do great and show them all, but I'm just upset with them right now!

1st Day of School

Avrianna's first day of school ~ 2nd GradeHer first "official" schoolMrs Kubiak her teacherHere 2nd grade Room

She was SO EXCITED that she has a locker!

Yeap right up in front.......watch out Mrs Kubiak! Heehee She's already to learn!

Danny is doing great! His labs that we did yesterday were just about normal, but shhhhh don't tell Danny. I am going to attempt his first shower today with Michael, I can't take any more wipe bathes. Wish me luck!

Getting There

WOW does the time slip away from me the last few days. I've gotten alot accomplished at the house...well at least with what is here. The other house is still full of stuff that needs to be brought over. I've gotten to the point that I can keep up with the loads that are being brought over. Once they get here I put the stuff away right away, doesn't mean the stuff will stay where I put it, but it's in the close vicinity and out of boxes at least. The OCD has kicked in full gear and the boxes were stressing me out, BIG TIME. I NEED order and organization ~ Hello my name is Lori and I have a problem, LOL!!
I started my MS treatment on Saturday. The nurse was nice enough to come out to the house and show me what and how to do it. WOW ~ not the painless way of doing it, but it has the lesser of side effects from the other options. I have to give myself daily injections which doesn't hurt at all, but afterwards for about 10-15 minutes it stinks like crazy. All most like a bee sting! I hope the treatments sets this MS at bay for awhile. With all the hustle and bustle around here my symptoms have gone into over drive. I've gotten very weak, my left leg seems to drag more which causes me trip over it often, and my sight is not the best. I see double and very fuzzy at times. The nurse wants me to call the doctor some time today to see if I should go on a 3 day dose of steroids to get the swelling down in the brain (active or enhanced lesions) down.
Avrianna is so happy to be going to school tomorrow. Which makes this decision alil easier to deal with. I know she will have a blast and do great, but it's not with me and and the bond that we share I'm afraid will dwindle. I just loved watching her learn new things and me being apart of it. WE will do great, I'm sure.
Danny is doing WONDERFUL! The last two days have been great! He has been in his chair most of the day, helping me organize. The TPN is going well and the feedings Dr. K and I have already started to increase, woohoo. We are starting the wean him off some of the sedating meds and pain killers, so I'm very happy about that. Nursing has gone without a hitch. It still is going to take some time for me to get use to, but I'm a work in progress :)
I am hoping now that tomorrow Avrianna starts school and with the nursing around I will have more time to blog. I miss you bloggies! I am going through blog withdrawal, LOL. I have some awesome pictures of the house and some of the kids so I'm hoping to get them up on here this week. Thanks for being there for me, we are getting there....slowly but surly we are getting back to "normal"

Anticipation

So sorry for the lack of updates....and the shortness of this one. WE ARE HOME!! Woohoo!! I just got internet yesterday hooked up to the house so I wasn't able to post, plus today is the first night I actually sat down for more then just a few to relax. It's been very exhausting and overwhelming for me. Not only to get Danny in line, but to be in the new house, trying to move, and my MS acting up. I am praying for a good night tonight....as since we've been home things have been touch in go. The fist night home I thought for sure I was going to have to load him up and head back. His heart rate was high, he spiked a fever, and he was breathing terrible. This all started about 2am and this started up again this morning too. We found the humidifier wasn't working properly, instead of giving heated humidity it was just blowing hot air out drying him out. I've had to replace 2 traches in the last 3 days so Danny was primarily on his HME to keep him humidified till we foudn the issues. Today Danny's nurse found the problem and now ALL is GOOD! Lets hope for some sleep!!!

I have had so many people come in the house in the last 3 days, I feel as if I'm being pulled in each and every direction. I so can't wait till we are moved totally in, the lil quirk's about the house have been dealt with and I have Danny's nursing down.

Today I went in and enrolled Avrianna into 2nd grade at Lakeview Schools....I have a very heavy heart. Afterwards I took her to the store and got all her school supplies and on outfit, thinking that would make me feel better, but no go. I came home and pretty much just pouted. I'm in a tail spin right now and not sure which way it up.....this is not helping the MS at ALL. So I've stepped down and instead of living in denial I've hung up my teachers hat, sigh. I don't want Avrianna to fall behind and I'm afraid I won't have enough to time or energy right now for her schooling. I'm really upset about it, but hoping for the best. Avrianna seems to be very excited about it :)

I will try and post more tomorrow. Danny just fell asleep so I'm going to crash. I don't think I will remember my head hitting the pillow. Sweet Dreams!

Results

First off...the top topic ME *sigh*. I'm alright bloggies! I know alot of you are worried, but honestly it really hasn't effected me. I think maybe when there is a definite diagnosis it might hit me briefly but right now I'm not acting or feeling any different. It's another thing on my list of to do things...it is what it is and we'll deal with whatever comes our way. I'm alil disappointed as the Neurologist appt (if I want it with the doctor) wouldn't be until the end of July so I'm going to stay on with the Practitioner but that appt isn't till the end of June. I hope nothing serious happens within that time frame. There have been many could be's so far, but not limited too: MS (multiple sclerosis), ADEM (Acute Disseminated Encphalomyelitis), CNVS (Central Nervous System Vasulitis), and some form of demylantion condition as the "insulation" around my nerves in my spine have started to deteriorate. They are lead to these option as they have found lesions (soars) in my brain and cervical spine (my thorastic spine looks good at this point). WHEW! So there is alot more testing to find out why and what this really is. I've heard a lumbar puncture is my next faze. Weird way to look at it is....I'm going through alot of the same experiences that Danny has already, NEAT ~ how many Mom's out there can say that! I look at my son and say "What do I have to complain about, if I end up in a chair?" What I have won't define me or who I am....it might take away some of my abilities but if you know me....that won't stop me! My worst fear (I try hard not to go there lately) is that I won't have the ability to care for my kids.....that would be devasting news! It's not the ability I'm worried about loosing...it's my cognition or my life for that matter. I have two kids that really need their mom, hell I really need them! Well know you all know what I know....which isn't alot but just enough to get you thinking. Thanks again for your support!

Today we went out to the new house....the tile is going in and so is the ceiling lift. I'm so excited! I love seeing the look of the house come together. You see just a small sample of what thing will look like and you really never know what it will LOOK like when it's put in.

The kitchen floorI can't wait to see how this lift works......I hope it helps make Danny's daily cares easier!We also went over to take a look at the changing tables that are being made locally by Steve Lockhart (Enable Design). OMG ~ the fire truck table is going to ROCK! Tuesday the kids and I got to see the head busts of the kids that I am having made locally too by (Tim Brunn) and I am in awe, speechless (I know, I can't beleive it myself). From there we went to see the stain glass (Coventry Glass) that is completed and ready to be installed in the house. It's been a VERY LONG haul and I'm so glad the house if finally coming together =)

Here is Danny hanging around at his last therapy session. Trying to see what he will do on all fours. He did great....we just need to get a bigger and better brace, this one is too small.

This is what happens when you lend over to pick something up on the ground and the cap off of Danny's formula pops open, heehee. She smelled like formula and was so sticky....we had to give her a bath after that, poor Bailey LOL

Today I am going to order Avrianna's 2nd grade school books.....WOW does time fly. I am so glad I get to have this opportunity with her.....priceless time that I will never get back. LOVE you GIRL!! She is doing so well ~ she has excessed all of my expectations.

Tomorrow we have a get together for the 25th birthday celebration for Make-A-Wish at the Timber Rattler Stadium and then we get to watch a game. So exciting.....please pray the rain holds out!!! I will post pictures tomorrow.

Thanks again for following our story....please post a comment or sign our guestbook to let us know you stopped by. We like hearing from you too :)