Sunday, August 28, 2011

Special Swim

Yesterday was just AWESOME over here at the Osero House. We threw our 1st Annual Special Needs Swim Party and I couldn't have asked for better weather for these kids :) What a great turn out we had too. What an AMAZING group of friends, no FAMILY! I don't know what I would do without these guys....We LOVE YOU GUYS!!
What a HANDSOME bunch of pool boys we have :)
Lil Man :)
The Randall's ~ How cool (I guess in my warped mind) I went to school with Amy, Our Daughters are in the same grade n school, and our sons are "Special" n trached. We are NOT alone in all this!!Danny and Griffin ~ Did these guys get HUGE or what! I'm telling ya the Packers missed out on two great front liners!!Griffin brought his family with him......Even Baby Emerson's got to met all of us :)The Prindle's
The Balogh'sThe Giebel'sAfter the pool party Dan and I went on a Date Nite ~ We went out of Dinner then off to see Boogie and the YoYo's play in Greenville. AMAZING nite!! Stayed out till 12:30...I can't remember when I was up that late for something other then kids and medical alarms.
GREAT GREAT time !!
All dolled up AND SOMEWHERE to go ~
Eric not only an awesome Guitarist and vocalist but a great Architect ~
Thanks for checking in on us. Please don't forget to Pledge HERE on our Make A Wish walk coming up on Sept 10th. YOU can make WISHES come true !!

Tuesday, August 16, 2011

Venting


Today Danny, Gail, Avrianna and myself spent the day at CHOW. WOW what a day! First appt was xrays of spine and hips then off to chat with the results to the doc. Good news his scoliosis is stable, NO rod lengthening ..... for now. His bend is 35 degrees right now which is less then what it was when we brought him in for his first lengthening .... which that was 40 degree. He's GOOD!
The docs really hoped that I would stay on course with EVERY 6 months for growth, BUT the curve is stable and I'm not going to put him through a surgery that doesn't need to happen yet. So in another 6 months or so we'll come back for more xrays and see then.
Danny's hips look great. I finally got to see an image without the right hip.
The left looks perfect...the muscles are what are giving us some grief. Danny is majorly frog legged .... luckily that is the best position to be in to preserve the hip n socket "relationship". So frog legged he will be :)
Avrianna was being such a good trooper ..... this was really her first time spending the day with appts in CHOW. She did GREAT!
After ortho we were off the trache/vent clinic. We got to see dietary and there is some concerns with his weight and puffiness so we have dropped down his formula even more. YIKES!! Danny will now be getting ONLY 19 oz of formula with 11 oz of water A DAY! We'll see how that goes. ENT came in and the wonderful non allergic ear tubes that were put in this spring are already out on the right side. The side that is ALWAYS infected, ugh! BUT it looks great n healthy right now so ENT wants to watch it and see how it goes. My gut says we'll be putting ear tubes in soon. Pulm was next.
Then onto the pulmonolgy appt. After much consideration, labs, and xrays.......the decision is made that Danny should be on a ventilator, for right now only at night. Danny has healthy wonderful lungs BUT he is not ventilating properly, which means he's not taking big enough breathes. His CO2 & blood gas levels continue to creep upwhile we still need to increase his oxygen levels to keep his sats up. We are fighting against each other. Vent it is. UGH! His lungs won't inflate big enough on their own anymore, BUT not because of his lungs.....the belief is this it's all stemming from Neurological damage. AGAIN with that!! Danny has an EEG next week and then we'll be seeing Neurology next month so we'll have ALOT to talk about...I hope they pencil in alot of time for us cuz the Doc isn't leaving until I get some questions answered! Unfortunately we (the nurses and I) have noticed some progression with Danny's decline, very low heart rates, shallow breathing, and lack of breathing while sleeping so I'm hoping this vent gives Danny a "jump start" to thrive. As I know it's only a matter of time when he'll just forget and stop breathing....ugh I think I'm going to throw up. I know this is all nothing I haven't heard before FOR YEARS, but when reality is here, it's .............. well upsetting. I'm trying to stay positive and strong but the feeling of anger is taking over. WHY my sweet Lil Man?!?! How long will he fight?!?! I just want things to be boring for us, is that so bad......I'm all over the I want normal I just want stable, just for alil while, is that too much to ask. AND STOP THROWING THINGS AT MY SON, HE'S HAD ENOUGH! We've had ENOUGH! This too will become our new normal and it will be like everything else, no big deal. It's just having to make these decisions over n over n over n over n over..... well you get the picture.
It's amazing, like I've said before, how much you adapt and they way you think changes as you go. If someone would have told me Danny would be on a vent even 3 years ago I would have disagreed with them. Then I've met wonderful kids on a vent and they are "still there". Does that make sense? I always had this misconception that vent would take way "Danny". He wouldn't be the same. As long as Danny continues to fight then I will do EVERYTHING and ANYTHING to fight for him! Once Danny isn't Danny anymore then we'll have some major decisions to look at. Now that Danny is labeled "vent dependent" that changes a few things around here for the nurses so they are off to training and let the paperwork BEGIN.
After a long and draining day Danny is napping ~ if only I could explain this all to him so he knows why :( ....... I LOVE YOU SO MUCH !!
While we regrouped at The Cheesecake Factory. That made it alil better.
Here is a picture from Dan's Deer stand camera ~ YIKES!! I think he's NUTS so go out there and sit in a tree with these cute bears around ready to eat him. A Momma n her 3 cubs!

Monday, August 15, 2011

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.

Sunday, August 7, 2011

Make A Wish Walk & Run 2011

Please Help Grant Wishes!

Our Children were blessed to have their wishes granted. Danny received his Special Adult Crib with mechanical hospital bed in March '07 which he continues to enjoy his WISH each and every night. Avrianna was granted her WISH Feb '09 which was to go on a Disney cruise with the Princess' and swim with the Dolphins. You can follow our stories at http://oserofamily.blogspot.com

I'm walking for wishes to help raise funds for Make-A-Wish Foundation® of Wisconsin. My participation in the Walk & Run for Wishes on Saturday, September 10 will help grant the wishes of Wisconsin kids with life-threatening medical conditions. Please consider a pledge to support me as we work together to bring wishes to life for these special children.

A wish allows children to stretch their imaginations, to focus on the positive when courage and hope might otherwise wane, to remain active partners in treatment and to rejoice when the wish is fulfilled. What could be better than knowing your participation will help make these special wishes a reality?

Thank you for supporting me and this worthy cause. You CAN make a difference in a child's life.

Follow This Link to visit my personal web page and help me in my efforts to support Make-A-Wish Foundation of Wisconsin ~ You can Join our team to walk with us on Sept. 10th and help raise Donations or Pledge a Donation from my Web Page.

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Lori Osero
http://oserfamily.blogspot.com

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Thank you for supporting Make-A-Wish Foundation of Wisconsin's Walk & Run for Wishes.
Our Children were blessed to have their wishes granted. Danny received his Special Adult Crib with mechanical hospital bed in March '07 which he continues to enjoy his WISH each and every night. Avrianna was granted her WISH Feb '09 which was to go on a Disney cruise with the Princess' and swim with the Dolphins. You can follow our stories at http://oserofamily.blogspot.com
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