Monday, May 31, 2010

Our first year of Gardening

The beginnings of a garden

Our does he work us and boy is he picky, LOL

Let the planting begin! We have sweet corn, bell peppers, habenaro peppers, hot banana peppers, dill, onions, cucumbers, pickling cucumbers, acorn squash, butternut squash, yellow squash, zucchine, peas, beans, strawberries and lets not forget the tomatoes. Phew ~ I'm exhausted!
Learning from the professionals, my grandparents
And my mom got her hands dirty too :)
It's been a busy weekend but very productive. Avrianna had 3 friends sleep over last night so I ended up with with having 5 kids in the house. The more the merry I always say! The pool and hot tub got a run for their money this weekend too. Avrianna is beat from going tubing at her friends yesterday, then in the pool in the evening and all day today with her friends, and I'm sure they didn't go right to bed. It's 5:30 and she is crashed out on the couch already. This from a girl who hasn't napped since she was 1. Oh yeah, that's right she's NOT TIRED, LOL ~ proof

I hope everyone had a SAFE and Happy Memorial Day!

Sunday, May 30, 2010

In a black cloud there IS a Silver Lining

We are still in limbo mode for setting up a new date for Danny's spinal fusion n rod surgery. The powers at be that would like to speak with me before rescheduling haven't contacted me as of yet. Which is ok by me, for now.... as we wouldn't have been able to enjoy this ~

Here's our 60x40 garden we're Dan says go BIG or go home, LOL. So you all know what will keep me busy this summer n fall. Hoping I get as least half of the green thumb my Great Grandparents The NaGreen's had.
And yes I did learn to work the John Deer, so I'm now officially a tractor babe....heehee. Not only can I work the bucket but I've gotten a few hours behind me on the lawn mower attachment.
Now this is serious, LOL! Farmer Dan ~
I will keep you in the loop for when we reschedule the surgery. I will update later as I found out I will be getting the family pictures we had taken a few weeks ago, so I'll be able to share more of those with you tonight or tomorrow.
Please don't forget to fly those flags this weekend. THANK YOU to ALL the veterans out there for putting you lives on the line to make our country a better place. Happy Memorial Day! Be safe ~ and never forget.

Wednesday, May 19, 2010

In Limbo

Surgery isn't reschedule as of yet, unfortunately there were patients scheduled already on June 1st that the surgeon was unaware of on Friday. So I am waiting to talk with a few doctors and higher powers in regards to all of our concerns about what transpired on Friday before we reschedule surgery. Now we just have to keep Lil Man healthy till we can get him back into the OR again. I am very happy that things are being taken care of and that we are being heard. These kids NEED a voice and I'm not afraid of being that voice and challenging them when I feel things are unacceptable. They are people too not just doctors and mistakes do happen, but I NEED creditability and acknowledgement of their mishaps. Things need to change before they can get better, and if I don't speak up who will. There are many out there without a voice or afraid to rock the boat. Unfortunately or fortunately, depending on who you are or how you look at it, I'm not lower then they are and I WILL rock the boat. I think they forget that our kiddos are living, breathing, feeling human beings not just "cases". The medical field can "deal" with these kids but can go home at the end of the day and leave it all behind them......we as parents are in the thick of it 24/7 365 days a year so we protect, advocate, and care for our kids the best we know how. This is ME the good, the bad, and the ugly.....but it's ME. Life is too short and there are too many variables to not speak your mind or to except second best. I think the dedication to these kids and to their job is lost at times. I'm around to help them find it or find something else to do, LOL. I don't think I ask for much..follow direction and treat our kids like they were their own when they are in their care. Yes it was a very disappointing day and I was upset, but I'm better (maybe still alil bitter, time will heal that).
We are all doing great here at the Osero household. We have been able to dwindle down my honey due list as the weather has been wonderful and that we are all healthy around here (a plus to not having the surgery). Dan and I have gotten alot of the outside work done and we went and got some flowers to help ring in spring. We are anxiously awaiting summer vacation to enjoy more of this warm weather.

Friday, May 14, 2010

Resting well

Danny has been up and alert for about two hours. He is doing great! He's got a red eye, well under his eye which I assume is from tape, UGH! He is off the vent now, he is being fed and tolerating that well. The nurse just pulled out his foley :). He still has two IV sites, both in his left foot one on top of another. There is a bruise that has started on his left clavical but that's due to the intense pressure to stop the the point of no circulation for 10 minutes. The xray they took shows the hole in his artery did close and they will take another xray in the morning to make sure it stayed closed and that no clot has decided to move. He is chilln out watching tv wondering when we are going to get out of here. I've chilled out myself now if I could get rid of this intense headache, but now that my blood pressure isn't boiling anymore I'm hoping it will go away. I'm just happy my son is here with us and doing well. I'm think he's wondering what all the fuss is about, LOL. I posted some pics of him on FB as I can't do it on the blog from my phone. Thanks again for all you support! We are so lucky to have you guys to be there for us and help pull us up.

What comes UP must.......

Where to start with this morning.....i really had thought it was going to be a great day with no hiccups, BUT. Surgery was cancelled and Danny is recovering in ICU from the bronc and ear cleaning well. He is hooked up to a vent buy they are decreasing the settings every so often. He looks GREAT! There was a mishap in the OR with accessing a central line. Which is a port that comes out of his chest like a super duty IV site that runs directly into his heart. Instead of threading the line into the vein it was thread into his artery. Because it is so close to Danny's heart the risk of it not closing properly and bleeding out during surgery was too high. This is a huge disappointment for us as we were prepared emotionally and Danny physically for this to happen. I'm just sick over this emotional roller coaster ride. Danny is tentively rescheduled to go back in June 1st. Barring I let him back here as once again there is serious issues around here with listening and lack of concern/care with my son. The floor has been wonderful with him and trying to make up for mistakes done in OR. I have the utmost respect for the doc the attempted the central line, even though there was a screw up he came out and personally apologized and excepted fault. BUT it's the ........ We specifically told multiple people and it was written down that Danny has reaction to tape so use paper tape no paper tape was used. We stated do not use plastic diapers and even supplied 3 diapers on his bedside that went to OR, but the sent him back with a plastic diaper. We made them aware that morphine doesn't effect him, but I'll let you guess what was ordered on his chart for pain control. I honestly don't know if I can trust them to adequately care for Danny. I'm so upset and just sick to my stomach. Who's running this show here. Why do I bother doing pre-op and telling thus people things over n over if no one is going to listen. I've already talked in depth to patient relations and I'm awaiting the higher powers to come visit the too so we can chat. This is unacceptacle and I will make my son's proper care known. It just breaks my heart to know the quality of care that is accepted down here. I will NOT tolerate ignorance!

Surgery has begun

Danny was taken into surgery at 7:45am. We started the morning off well so I feel better that we started off on the right foot. They decided to put in a central line to better monitor him and to have direct access for blood transfusions and meds. They are going to be taking out his Trache and replacing it with a cuffed type so there is no air leakage during the surgery. The ENT is going first to do a deep cleaning of his right ear and to bronc him, just making sure everything healed from the Trache surgery a year ago. Then the grooling back surgery shall begin. That surgery alone will take approx 7 hours. I've been told not to worry when I do see him, as his eyes n face will be very swollen from laying on his tummy for so long during surgery. They are going to update us approx every 2 hrs so I'll update you as I find things out. Unfortunately my blog will not allow me to update via computer, BUT I can update via my phone. So sorry if it's short n sweet or if things are no right as I'm not good at typing with this phone yet.
UPDATE already. ENT is done. Ear is ok but not great cuz of constant drainage. The doc thinks he will always be battling this. The Trache looks awesome and the bronc shows everything loons good down there. They are putting in more lines right now and repositioning him. I will keep you posted as I hear more

Thursday, May 13, 2010

No turning back

No Pun Intended! LOL

Please enjoy this sneak peak of our family pics that were taken last week. A HUGE thank you goes out to Nicci from Little Foot Photography !! You did a wonderful job

Today we start the newest venture with Danny, to straighten his back. We are leaving here this afternoon and heading down to Children's Hospital of Wisconsin, well actually the Ronald McDonald house tonight. I can't believe that we got a room already, stresser already that has been lifted. Even though it's one night he will be there I have to bring everything for Lil Man. So the packing has begun. I'm almost finished :)
The real fun begins already at midnight when all his feeding/eating stops. Then I will need to get up at 4:30am to give him all of his morning meds and get myself ready. We are due at the hospital at 6am to get him prep'd for surgery and do some labs to have his blood matched with their blood bank because it's a given he will require units of blood during surgery. Surgery is to begin at 7:30am with the ENT's going in first to bronc him and do a serious ear cleaning. Then the to get rid of the turning back, or the best that they can. The surgery will be anywhere from 7-10 hours. sigh.
I will keep you all posted as the day progress's and when I get updates from the OR. Thanks for your positive vibes and following our journey. I means alot to us!

Saturday, May 8, 2010

To MY Special Needs Mom's and Friends ~ I couldn't do it without YOU

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Wednesday, May 5, 2010

Our Home

Here is the new and improved virtual tour of our handicap accessible home. Enjoy!

Click to play this Smilebox slideshow: Our Home
Create your own slideshow - Powered by Smilebox
Another free digital slideshow by Smilebox

Meet the Teeter's - Part 2

Please click HERE for Part 2 of my friends ~ The Teeter's story
"Home & disabilities fight against each other"

Top 20 Reasons Moms of Kids with Special Needs ROCK

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.

2. Because we’ve discovered patience we never knew we had.

3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.

4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.

5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.

7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.

8. Because we are strong. Man, are we strong. Who knew we could be this strong?

9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks,
cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.

10. Because we work overtime every single day.

11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.

12. Because we are more selfless than other moms. Our kids need us more.

13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.

14. Because we inspire one another in this crazy blogosphere every single day.

15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.

16. Because we never stop pushing for our kids.

17. Because we never stop hoping for them, either.

18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.

19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."

20. Because, well, you tell me.

Tuesday, May 4, 2010

Pre-op appts

Yesterday's appt went very well considering how the morning had gone. We had to have Danny on Oxygen 4 liters to get him to sat around 90 on the drive down there. At one point I was wondering what was the point of driving down there as I knew they were going to just send us home. I think Danny likes to just keep me on my toes.
First we went into see the anesthesia pre-op nurse. She was wonderful with Danny! He managed to behave himself and didn't need any oxygen. He did have a few spells of retching, but it was due to him being vented as it was really windy yesterday and with him being continuously fed he tends to get alil more air in his tummy. I could tell she and other docs were a bit concerned with proceeding with surgery the way Danny is. BUT they did a slew of blood work, urine testing, I agreed to have an xray done 2 days before, so if anything comes up funny I will call it off. Even though I don't want to see my Lil Man go through another surgery I am FULLY prepared and ready for it so to postpone it would be awful.
Here are some of the pre-op images taken yesterday.
To the left shows his 80 degree bend all in the lumbar area. Here you can see the right side VERY scrunched and the "puck" sitting very well in the area. To the right....there were two radiologists one on each side with paddles and they pushed up again his bend to manipulate his bend as straight as possible (don't worry it only bothered me as Danny had a smile on his face the whole time). This is what they are hoping to achieve during surgery. Look at how long his body is now and all the room his "puck" and organs now have. For this reason alone I am excited to have the surgery done.

He should sit better in his chair, be able to take deeper breathes, have better bowel and urinary control, and have less discomfort on his left hip/ribs because of the "puck" rubbing on them. I don't want to see him go through this surgery BUT I do, does that make sense. This will be the BIGGEST surgery of his life not only in length of surgery but I'm hoping for the biggest improvement on quality of life for him. While he is under the ENT is going to go in and do a bronc to double check everything is going well with his trache.

Here he is smiling after he had a HUGE blow out in the Ortho surgeons office, LOL. He was VERY proud of himself. My last picture of him smiling WITH front teeth.

Then he was off to the dentist........4 teeth were extracted. UGH! Once again he did ALOT better then me, LOL. He was a trooper :) My piranha no more.....for awhile at least. CHEEZ!

Meet The Teeter's

I have had the pleasure of meeting part of this wonderful family. They went through our home during the parade last year and we've been following eachother ever since. We were even able to meet Annie and Zak in person last winter when we were in Wausau for one of Avrianna's swim meets.

Click HERE to watch The Teeter's story video, part 1.

by Cami Mountain

WAUSAU (WAOW) -- When a child is born with any type of physical or mental disability, a parent's life changes forever. But imagine if both of your children have disabilities. It's a reality for a Wausau couple.

A few weeks ago, I met Chris and Annie Teeters. The couple, married almost eight years now, always dreamed of having the perfect family, including children. They got their wish, a beautiful boy and a girl.

But their births weren't typical in any sense of the word. In part one of this special report, meet Zak and Callie.

You wouldn't know just by glancing, but Zak Teeters is five years old. He can't walk on his own, he doesn't talk and is legally blind.

Zak was born with a chromosome abnormality known as Unbalanced Translocation. It was passed to him in the womb, unknowingly, by his mom Annie.

"Chromosome three and six, I'm a carrier, they switch spots. "Annie says, "When we had kids, they're missing part of chromosome three and they have extra chromosome six."

The abnormality, undetected during pregnancy, noticeable the minute he's delivered by C-section.

"Once Zak was born, I heard the doctors gasp basically." Chris, Zak's dad says, "I looked up and as Zak was being delivered, he was covered in a mucus and wasn't crying. Something was going on. I didn't get a good feeling from the room that everything was ok."

Just minutes after birth, Zak flat lines in the nursery. Luckily, doctors revive him and eventually figure out he cant breathe through his nose. It's just the start of many medical problems to come. In just a few short years he's had surgery to open his nasal passage, surgery to lift his eyelids and a major surgery repairing his spinal cord. That one left him in a full body cast for a year and a brace for another six months.

But with all of Zak's medical issues, the Teeters want baby number two, even though they know that baby could have the same issues.

"We knew I was a carrier." Annie remembers, "We had a 16% chance of it happening again and we decided to put it in God's hands."

Several minutes after Baby Callie is born, it's clear she has the same chromosome abnormality. In fact, they're the only two known children in the entire world with the same exact breaks.

With Callie's birth comes many of the same medical issues and surgeries as her big brother. Between them they've had 21 operations. The condition leaves than much smaller than children their own age and developmentally behind.

"Zak is five years old and he's still working on crawling and talking. Basically, he relies on a caregiver for all his essential needs. So, developmentally he's been evaluated at about twelve months." Chris says, "Callie; she's fourteen months now and developmentally, I think, she's four or five months, developmentally wise. She's just now working on rolling from her back to her stomach to her back."

The Teeters kids do the same things as other kids, just at their own pace. And their parents applaud every milestone, big and small.

Annie says, "We called everyone when Callie first grabbed a Link-A-Do and held it. It's like, "Oh my gosh! Callie is holding a toy!"

Since Zak and Callie's diagnosis is so rare it's incredibly understudied. Chris and Annie have no blueprint, no other cases to use as an example.

"Life expectancy is normal." Annie says, "They don't have anything saying they're going to pass at a certain time."

That leaves the future wide open and the Teeters living for the day.

"We have high hopes that Zak is going to be able to walk someday and that Callie will walk and they will learn to get around our house. But, you just don't know, just dreams."

Online Reporter: Cami Mountain

Sunday, May 2, 2010

Set Back

It the old saying two steps forward and one step back. We are still making gains respiratory wise, but yesterday afternoon Danny started to wretch with his feedings, cry, and when I went to vent his tummy brown specs came out ~ It looks like coffee grounds. So he's obviously bleeding internally somewhere, now it's just a matter of finding it and seeing how bad things are. Never a dull moment around here, I tell ya. I have emailed his Ped and Palliative docs and we'll see what advise they have for us. Poor Lil Man! I will keep you posted on what I find out.
For those of you looking for something to do on this windy but beautiful day, stop out at WIR and see Dan. It's his first day at the race track for the season, he's like a kid in a candy store today :)

Saturday, May 1, 2010

It's working

The Tobi neb we started with Danny yesterday afternoon is already taking affect. I can already see an improvement with him. I was able to even get almost a smile out of him today :) He is breathing better, his heart rate has come down, and he even slept most of the night last night. Which means this momma got some sleep too. I still haven't heard back with the results of the blood work or loogie culture yet, but the treatment path we started seems to be doing the trick. I still have plans on going to CHOW for the day on Monday to do all the pre-op appts and to have his teeth pulled. I can only hope that he improves even more and he won't need any Oxygen while on our travels. He still is on 2.5 liters so we've been pretty much confined to his bedroom, but that ok to have some cuddle time :0) I think I even have our outfits picked out for our photo shoot here at the house on Friday. I am so excited to be getting much needed and way over due photos taken of our family. I'm really glad I was able to find a photographer that not only will come to the house, BUT can do it before Danny's surgery. Whoohoooo!
Avrianna's sleepover was a hit. The girls hung out downstairs for most of the evening playing games, chit chatting, and watching movies. I had to put my foot down around 1am for them to GO TO BED! Mind you they were suppose to be sleeping by 11, but still at 1 they were giggling. Oh the joys of being young!
I have started a "My Community" a place were we all can go to connect with one another, ask questions, and follow each other. Feel free to join my community! I hope it will become a great place to come for friendship, resourcing and advice. Click on the link to the left to join, hope to see you there.