I Know Different

This is beautiful! It was written by Tricia Proefrock & I wanted to share...

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

The First Picture of my sweet Lil Man, Danny ~ from THAT moment I touched his hand for the first time I KNEW we were going to Different, and that we'd have a bond unlike no other. To my HERO ~ Mommy Loves that you "Know Different"

Thank You Tricia Proefrock for writing this ~ It's AMAZING!

Attitude

It's ALL about ATTITUDE!

Yesterday as I was waiting to get Danny's Flow Sheets from the printers in their entry was this saying.
"The longer I live, the more I realize the impact of attitude on life. Attitude, to me is more important then facts. it is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church.... a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you... We are in charge of our Attitudes." ~ Charles Swindoll
How appropriate and TRUE! I just had a conversation with a good friend, one of our neighbors from our previous house, about this very thing. How appreciative she was that I do this blog and my up beat twist to all of our lives journeys as it has helped her through her life's journeys. I'm greatful that this site has been not only a tool for myself but that it's a way for others to cope with their things, educate themselves, and a means of support for YOU and I. This blog is serving a wonderful purpose and I couldn't be more happy.
This last weekend Avrianna had another swim meet, this time in Howard Suamico. She participated in both Saturday and Sunday meets. This meaning we had to be up very early so Dan and I could get her there on time (she needs to be IN the water at 7am~ we live about hour away). She did GREAT! Once again Avrianna got a medal :) How exciting! She placed with a ribbon or medal in all but one meet She had NO disqualifications and improved her time in just about every stroke. So she was able to add 8 more her wall. She keeps this up and we are going to have to think of a different idea to display them all.....we are running out of room. I'm so proud of her!!
Our newest addition Gunner started Puppy classes last week too. Yesterday was his second class and he's enjoying his training. He's very smart, but can be alil stubborn (go figure). He's managed to charm the instructors and some of his canine friends already. He's cute and he knows it, LOL.
Danny has been doing pretty good. He's still having his bouts of pain with crying, the lip and tears so I'm anxiously awaiting the results from his CT scan of his right hip and the scoliosis xray that was done yesterday, here at the local hospital. The scan will show if something can be done with his dislocated hip (the one side that has already been corrected but failed) and the scoliosis xray will show if he needs to have his VEPTR rods grown out sooner then later. UGH more surgeries potentially knocking on his back door.
Dan has been a busy bee getting all the seasonal stuff done around the house before the weather turns and before the BIG hunt. Well see if he shoots the deer this time instead of catching just a cold.
I have started another relapse with my MS, sigh. I've had a constant headache for 6 days and I've tried everything to get rid of it. Last night and this morning being the worst... nauseated, vision is blurry and my eyes hurt, shooting constant pain in head and running down my neck, my teeth even hurt, and weakness in my legs. All the meds I've been taking and NO relief. I've called the Neurologist's office twice now to start the treatment, with no replies as of yet. Very disappointing as I have all I can do is to think right now rather then exerting my energy on the phone trying to get in contact with them. If they don't call soon I will just go into the ER, frustrating as it's not in my schedule to sit around and get better.
I had the opportunity to share my story on a new Online Forum for Birth Injuries. They published part of my story in their first issue. Click HERE to go their site, please check it out and join the forum.
Thanks for checking in on us.

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.

The Fireman

A friend of mine shared this story with me.....I just had to share. Most of you know I truly believe my lil man is my Firefighter. Danny comes for a line of firemen in the family.....and I believe in my heart that he too would have been a life saving fireman....he saved my life :). I am decorating his room like a firehouse, LOL. To All you men and women that brave your life to save the lives of others.. THANK You!!

THE FIREMAN
In Phoenix , Arizona , a 26-year-old mother stared down at her 6 year old son, who was dying of terminal leukemia. Although her heart was filled with sadness, she also had a strong feeling of determination. Like any parent, she wanted her son to grow up and fulfill all his dreams. Now that was no longer possible.. The leukemia would see to that. But she still wanted her son's dreams to come true.She took her son's hand and asked, "Billy, did you ever think about what you wanted to be once you grew up? Did you ever dream and wish what you would do with your life?" Mommy, "I always wanted to be a fireman when I grew up." Mom smiled back and said, "Let's see if we can make your wish come true."

Later that day she went to her local fire department in Phoenix , Arizona , where she met Fireman Bob, who had a heart as big as Phoenix . She explained her son's final wish and asked if it might be possible to give her six-year-old son a ride around the block on a fire engine. Fireman Bob said, "Look, we can do better than that. If you'll have your son ready at seven o'clock Wednesday morning, we'll make him an honorary fireman for the whole day. He can come down to the fire station, eat with us, go out on all the fire calls, the whole nine yards! And if you'll give us ! his sizes, we'll get a real fire uniform for him, with a real fire hat-not a toy one-with the emblem of the Phoenix Fire Department on it, a yellow slicker like we wear and rubber boots. They're all manufactured right here in Phoenix , so we can get them fast."

Three days later Fireman Bob picked up Billy, dressed him in his fire uniform and escorted him from his hospital bed to the waiting hook and ladder truck. Billy got to sit on the back of the truck and help steer it back to the fire station. He was in heaven. There were three fire calls in Phoenix that day and Billy got to go out on all three calls. He rode in the different fire engines, the paramedic's van, and even the fire chief's car. He was also videotaped for the local news program.Having his dream come true, with all the love and attention that was lavished upon him, so deeply touched Billy that he lived three months longer than any doctor thought possible.

One night all of his vital signs began to drop dramatically and the head nurse, who believed in the hospice concept that no one should die alone, began to call the family members to the hospital. Then she remembered the day Billy had spent as a fireman, so she called the Fire Chief and asked if it would be possible to send a fireman in uniform to the hospital to be with Billy as he made his transition. The chief replied, "We can do better than that. We'll be there in five minutes.Will you please do me a favor? When you hear the sirens screaming and see the lights flashing, will you announce over the PA system that there is not a fire? It's just the fire department coming to see one of its finest members one more time.And will you open the window to his room?

About five minutes later a hook and ladder truck arrived at the hospital and extended its ladder up to Billy's third floor open window 16 firefighters climbed up the ladder into Billy's room. With his mother's permission, they hugged him and held him and told him how much they loved him.With his dying breath, Billy looked up at the fire chief and said, "Chief, am I really a fireman now?" "Billy, you are, and the Head Chief, Jesus, is holding your hand," the chief said.With those words, Billy smiled and said, "I know, He's been holding my hand all day, and the angels have been singing..."
He closed his eyes one last time.

Grandma's Hands

I found this story in an email and was inspired to do a portrait of my four generations of hands. I do have a fifth but my great grandmother wasn't available at the time....so hoping to update this picture when I see her, but for now thought I would share. The story is about a 90 year old lady telling how her hands carried her through life...Avrianna'a Great Great Grandma Sophia NaGreen is 96 and doing very well. I can see her telling a story just like this!

Four Generations of Hands = Great Grandma Kohl (Beverly Kohl) 75, Nanny (Debbie Witt) 55, Mom (Lori Osero) 34, Avrianna Osero 6

GRANDMA'S HANDS

Grandma, some ninety plus years, sat feebly on the patio bench.
She didn't move, just sat with her head down staring at her hands.
When I sat down beside her she didn't acknowledge my presence
and the longer I sat I wondered if she was OK.
Finally, not really wanting to disturb her but wanting to check on her
at the same time, I asked her if she was OK. She raised her head and
looked at me and smiled. "Yes, I'm fine, thank you for asking," she
said in a clear voice strong.
“I didn't mean to disturb you, grandma, but you were just sitting here
staring at your hands and I wanted to make sure you were OK,"
I explained to her.
“Have you ever looked at your hands?" she asked. "I mean really
looked at your hands?"
I slowly opened my hands and stared down at them. I turned them
over, palms up and then palms down. No, I guess I had never really
looked at my hands as I tried to figure out the point she was making.
Grandma smiled and related this story:
"Stop and think for a moment about the hands you have, how they have
served you well throughout your years. These hands, though wrinkled
shriveled and weak have been the tools I have used all my life to
reach out and grab and embrace life.
They braced and caught my fall when as a toddler I crashed upon the floor.
They put food in my mouth and clothes on my back. As a child, my
mother taught me to fold them in prayer. They tied my shoes and pulled
on my boots. They held my husband and wiped my tears when he went
off to serve our country in time of war.
They have been dirty, scraped and raw, swollen and bent. They were
uneasy and clumsy when I tried to hold my newborn son. The left hand
is decorated with my wedding band they showed the world that I was
married and loved someone special.
They wrote my letters to him and trembled and shook when I
buried my parents and my spouse.
They have held my children and grandchildren, consoled neighbors,
and shook in fists of anger when I didn't understand.
They have covered my face, combed my hair, and washed and cleansed the
rest of my body. They have been sticky and wet, bent and broken, dried
and raw. And to this day when not much of anything else of me works
real well, but these hands hold me up, lay me down, and again continue
to fold in prayer.
These hands are the mark of where I've been and the ruggedness of life.
But more importantly it will be these hands that God will reach out
and take when he leads me home. And with my hands He will lift me
to His side and there I will use these hands to touch His Face.
I will never look at my hands the same again. But I remember God
reached out and took my grandma's hands and led her home.
When my hands are hurt or sore or when I stroke the face of my
children and husband I think of grandma. I know she has been
stroked and caressed and held by the Hands of God.
I, too, want to touch the face of God and feel His Hands upon my face.
When you read this, say a prayer for the people in your family. Those
generations above you and those generations after you and watch
as God's answers prayers in your life and all of your family's lives.

Let's continue always to pray for one another.

-- Author Unknown

He's my Son

I found this song on another friends site and just had to share. Please watch!
http://uk.youtube.com/watch?v=ppQ0QjmuEt8

Here is a moving story. Called 99 balloons about a little boy named Elliot
http://www.youtube.com/watch?v=th6Njr-qkq0&NR=1

Everything here is well. Danny never did fall asleep yesterday, even with being up since 3am. Guess he didn't want to miss anything, LOL.
We had a crew here at the house all day yesterday to pour us a bigger driveway. With all of Dan's toys we need more space, heehee.
I had a scratchy throat most of the day yesterday and have woken up today with a soar throat and stuffed up. I'm hoping it's just something in the air that is bothering me and not a cold bug already.
Hope you enjoyed the song and story~ Take care

Innocence of children

As I got my lil man ready for a big day shopping with us girls...Avrianna turns to me and asks if Danny will be walking when he becomes a dad. WOW! Totally hit me off guard and where does this stuff come from. I know this is a first for you all but I was speechless...dumbfounded you could say. I had to turn away and just about cry.. not only will my lil man not walk but he'll never be a dad, wow that just hurts.
Well I picked up my heart and decided to keep on keeping on.
We did end up going to a bunch of rummage sales around the area and even found a few things for Danny. I got the cutest Halloween costume for him, I can't wait! Talk about a gourgeous day to go rummage sale shopping. The sun was shining and there was nice breeze....just a great fall day. My neighbor came with us and then took us out for chinese at lunch for my birthday. Thanks! :) As we were unloading the van when we got home Danny's PT, Mr Dan (yeap another Dan), just about followed us in. So Danny got stretched out and even rolled from both of his sides onto his back multiple time, Yay! Danny was really having a FUN time today with therapy. We altered his AFO's in hopes that Danny won't clench his lil toes so hard when in the stander. When I get him out the bottoms of his toes are so red and irritated from the clenching down. Well I hope the added padding Mr Dan put in will help. Avrianna enjoyed trying to steal the attention and gave us all a fashion show (instead of doing school work) with the dresses we bought for her today, poor Mr Dan, lol. We will be seeing Mr Dan two times a week now as on Monday Danny starts his water therapy again, so watch out life guards my lil stud muffin is coming and he still has a tan, woohoo! LOL
Cute, small world story: My mom was out to dinner tonight when her husband was introducing her to an aquaintence of his. Some how they got on the subject of Make A Wish as the couple does alot for them because their daughter passed away 2 years ago due to a rapid cancer. Well they were going on about Danny and his bed that he got from MAW and that Avrianna is awaiting her wish. My mom was talking about how great I am with the kids and some other things when the lady turns to my mom and asks with a strange face what our last name is....she told her....and the women with excitement I guess says I KNOW HER. She was one of the women at the eye clinic yesterday that helped us out...how funny is that. Well then I guess they went into more detail, oh boy, but long story short I guess I made an impression on the woman. They parted their ways and ate dinner...then later on the women came over to my mom gave her a big hug and told her to give that to me as she said she was so impressed with the me and how I handle the kids. She was so touched on how she could see how much Avrianna loved her brother and that my attitude towards things is so positive(boy do I have them all fooled,lol). Well it made me feel good to hear that!
Just to fill you in our CB friend Matt is doing better, he's stable now and hoping to get out of PICU and on the general floor soon. He has an aspirated pnuemonia and GI problems. This is September kiddos.....everyone is getting sick so early this year. I'm scared to death what this fall and winter are going to be like, YIKES!
Unfortunatly I was unable to put Cole's site on here sooner as he is a lil boy I just started to follow. This afternoon he earned his angel wings so please go onto his cb site and leave some words of comfort for his family today who I know are having to endure one of life's hardest journeys....the lose of a child!
http://www.caringbridge.org/visit/coleruotsala
I hope the start of the school year is going smoothly for you and that you are staying HEALTHY! Life life for today as you can not change tomorrow and you never know what tomorrow is going to bring. I am so trying to live by these words! Have a good one!

Uncomfortable

Danny continues to be uncomfortable. He whines alot and will still cry out. He has never done this before even after a surgery that would warrant this. I'm just frustrated as I can't pin point the problem: ears, hip, or just miserable from this bug. I am calling Dr Kasper this morning to see if we can come in and he can take alook at him and give me some answers. The kids and I went to a local parade yesterday, thinking we were ok to do that, and it was more work then I cared for. Danny wanted nothing to do with his chair and cried alot so for most of the time I was hold him, ARGH! My back is paying for it today carrying a 50 lbs boy that has no tone to help me out for 1.5 hours does a wonder to your back! I will try and post later if we are able to get into the doc. Here is story I found totally appropriate on another site that I follow, enjoy!
Dan raced on Saturday and had a pretty nice night. It's a learning curve this year as this is the first year he has been racing full time. So he is trying to dial the car in and learn what it can and can't do. For the most part is was a very productive night!


A Mayonnaise Jar and Two Cups of Coffee.


When things in your life seem almost too much to handle, when 24 Hours in a day is not enough, remember the mayonnaise jar and 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand.

The students laughed.

'Now,' said the professor, as the laughter subsided, I want you to recognize that this jar represents your life. The golf balls are the important things - God, family, children, health, friends, and Favorite passions--things that if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter like your job, house, and car. The sand is everything else -- the small stuff.' If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls.

The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. So... Pay attention to the things that are critical to your happiness. Play With your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. 'Take care of the golf balls first -- the things that Really matter. Set your priorities. The rest is just sand.'

One of the students raised her hand and inquired what the coffee represented. The professor smiled. 'I'm glad you asked'. It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend.

Daniel James "Danny"

Danny was what I say our planned oops. We had such a hard time trying to get pregnant with Avrianna that I though it would take us just as long to get pregnant again. When Avrianna was 5 months old we started the process once again and much to our surprise the first month it happened!! It was scary and wonderful all in one. I had a baby that was still a hand full and then one on the way. I was overjoyed mostly as I was told I wouldn't be able to ever have children so this second time was a blessing and I never wanted Avrianna to be an only child.
My pregnancy didn't go smoothly at all with Danny. Danny was due in January of 2004 but I started contractions in September of 2003. YIKES! So after stopping labor MANY times and steroids injections,to hopefully prepare him just in case we weren't able to stop them, we were able to hold it off till 37 weeks. I was terribly miserable and had gained over 100lbs with this pregnancy. My body had enough!
Danny had an induced labor 3 weeks early and he weighed in at 9lbs. 1.9oz and was 21" long. During delivery things went wrong, he was delivered with no pulse and not breathing. The doctor and nurses preformed CPR right there on my bedside. They intubated him in the room and off he went to the NICU, but not before I touched his little hand. I so longed for the moment that my baby was going to put on my chest as with Avrianna being premature she was whisped away right away too. He had a rough road to say the least as his brain started to swell and have internal bleeding, then the seizures started. I think I went into shock, I couldn't believe what I was hearing and after awhile I stopped hearing everything. All I could do is sit and cry! Danny was unable to eat, and do everything a newborn should, he was "broken". He sustained left biracial plexus as they needed to pull him out once they realize things were not ok. After a month in the NICU at a local hospital he was sent home for us to care for.
Danny has an extensive and wonderful team of doctors, from Children's Hospital of Wisconsin, now working to help him have a quality of life. There are 13 doctors on his team now with the hopes that we won't have to add any more in the near future. With Dr Kasper being our primary already with Avrianna I say Danny was his BONUS! He is a wonderful man and great doctor. I truly believe our family wouldn't be where we are today with out all of his help.

Danny has anywhere from 10-15 diagnosis/conditions depending on his health status. Most of the them are:

Hypoxic Ischemic Encephalopathy (lack of air and blood to the brain) ~Severe Spastic Quad CP (type of Cerebral Palsy that has stiff tone in all 4 extremeties)~ Seizures~ Clonise (limbs continue to jitter)~ Kyphoscolosis (back bends forward and to the side), Laryngo & Tracheal malacia (floppy air way which helps with the respitory probl~ms and aids in him not eating)~ Left Broncial malacia (opening on left side of lungs are small and weak)~ Cortical Vision Impairment (Brain doesn't comprehend what the eyes see)~ Optical atrophy (both nerves from eyes to brain damaged)~ SIADH (body doesn't regulate salt levels, COPD & Sleep apnea (chronic obstructive pulmonary disorder),~Hydronefrosis Kidneys (bladder backs up in kidneys causing infections)~ Chronic Ear Infections~ Weak pulmonary toilet(unable to clear lungs & airway)~ Unstable temps~Precocious Puberty(already in full blown puberty) ~ Trache ~ SMA syndrome (artery feeding into stomach isn't working properly) ~ Hanging Right Hip (Girdlestone procedure = they cut half the femur bone and the ball off)

Dannys has 13 different oral medications that he takes 2-3 times a day. He has a Baclofen Pump implanted in his stomach area that has a catheter that runs up his spine. That administers the drug directly in his spinal fluid to help reduce the tone in his body. Danny now uses a Bipap at night to help not obstruct while sleeping and using the PT vest and the Cough Assist during the day to help him move his secretion out of his lungs.

He has had MULTIPLE MULTIPLE (somewhere in the 30's) surgeries, all of them performed at Children's Hospital of Wisconsin . Which some of them were a feeding tube, the Interathecal Baclophen pump, ear tubes, opening up his air way(Superogtollplyasty), closing off the stomach to the air way so he doesn't have acid reflux so bad (Nissen or Fundoplication), Tracheostomy (breathing tube in his throat), hip (repair of a dislocated right hip) , Girdlestone (removal of part of his right femur bone and all of the hip) and others to help diagnosis or maintain his conditions. Danny had the VEPTR II rods put in his spine to correct his severe lower lumbar scoliosis

Danny has Physical, Water, Occupational, and Speech therapies that all come to the home once a week with the exception of the water. He has Vision therapy twice a month and mobility therapy that comes four times a year. He has been successfully working with a power scooter that he can work with a head switch. That is showing us that he can/might understand commands. He really enjoys playing in his stander, the pool, and his swing which is in the ceiling of our home.

Danny was granted a wish from the Make A Wish program. He was giving a new big boy bed. Which is an adult crib built around a hospital bed that vibrates and moves at the head and foot. The crib was built by Steve Lockhart a local man here and the hospital bed with memory foam mattress was from Verlo. I can't Thank all the helped make Danny's dream come true enough. He LOVES his bed!

We take trips to Florida about twice a year where Danny and his sister love being in the pool and warm weather.

Well I think that's it in a nut shell. He continues to be our ray of hope. I will never be able to teach him as much has he taught me. Danny's health is always a roller coater ride so please stop in at our site and see what we are up to next. Thank you again for following our story and keeping us in you thoughts.

See how much he's grown up!

Pic 7-2010

Pic 9-09

Pic 9-08

Pic 2-07


Pic 9-04
Pic 3-04
Pic 12-25
Pic 12-23

Avrianna Lee

Avrianna's pregnancy was our second attempt to start a family. Unfortunately we had complications early in my 1st pregnancy which resulted in a miscarriage.
Avrianna was to be due around Christmas time 2002. I had gestational diabetes that I wasn't able to control with my diet so I needed to give myself shots 3 times a day to help regulate my sugars. Avrianna wanted to bless us with her presents early as on October 24, 8 weeks early, my water broke getting ready for work. After many tests that were performed to make sure she was "ready" they allowed me to continue labor and deliver her 8 weeks premature. Avrianna was born 5lbs 6oz, 19" long, and she was a pistol from second one. Her lungs were formed and working but she still needed a pick me up for a couple days on the oxygen hood in an incubator. She didn't have the suck, swallow, breathe thing down pat so we had to teach her how to eat. While we were doing that she was fed mostly by a tube that routed into her nose and down into her tummy. The feeding issue became the most challenging thing for us to get her go home. Avrianna was born with a blood disorder called Hereditary Spherocytosis. This is means her blood is shaped differently then you and I (sphere shaped instead of donut shaped), which has a tendency to back up in her spleen, and is also known to have homiletic anemia. It has alot of the same symptoms as of Sickle Cell. She will always have the disorder but will probably need a complete spleenectomy later in life to help manage it. She spent alot of hours/days under a bili light as she was VERY yellow with jaundice. She escaped having a blood transfusion in the NICU but later in life wasn't so lucky to dodge that bullet. After spending 6 weeks in the intensive care unit learning to eat and us learning how to raise a little girl with a blood disorder, they sent her home. With giving us the mind set that with her being premature she could be "behind". I can remember taking her home and laying her on the couch looking at her wondering, NOW WHAT? I have been in the shadows of nurses and doctors with this little girl and we're all by ourselves now. I was scared out of my mind. We were referred to a special needs pediatrician that has helped us tremendously with caring for her. We started with having blood draws done once and week and worked our way to having them done once every year at the ripe old age of 5, unless she was sick we would do them more regularly. Avrianna can not fight off bugs and viruses like most people can so she tends to hang onto it longer and will get real yellow from the jaundice, pale, lethargic, and her spleen will back up causing it to enlarge. Avrianna has always held her own without the need for any blood transfusions until in Florida spring 2008 on our family get away she some how got the parvo virus that caused her system to shut down, she was diagnosed with a Aplastic Anemic Crisis. Her spleen enlarged to a dangerous size, she was so tired, her blood count was low, and her bone marrow stop producing ALL new blood cells. Avrianna averages on her own her hemoglobin around 10 and her retic (making new blood cells) is always in good range for her. At the time of her first blood transfusion her count was at 4.9 (normal transfusion is around 6) and her bone marrow still wasn't making new cells. She had a miserable time with the transfusion as her little veins didn't like the rate they needed to run the drip in. She had a high fever and started to go delusional I was so scared with knowing this could take her life! After 5 days in the hospital she was able to go home, but her body took 6 weeks to get back to her "normal". Avrianna had her spleen and gall bladder removed at age 6 in December '08 at Children's Hospital of Wisconsin in Milwaukee (along with her brother getting his hip surgery done at the same time). The surgery was done laproscopically so she only had 5 lil incision in her belly. Her spleen was very enlarged when it was removed, I was told it was the size of a grown man's hand. She is doing wonderful after surgery and she is even more excited to be able to do more active sports again. Our main concern with her is if she should go septic, as without the spleen her system can't fight off certain bugs n virus' and she will tend to hold on to an illness alil longer then normal. With her being at such a high risk of compromised health our family chose to Home school her till 2nd grade. She did doing wonderful and went smoother then I has ever anticipated it to go. Way to go! Guess we showed them that she definately isn't "behind" in any aspect of her life. She in now in the public schools in the Neenah School District and she is loving it :) Avrianna loves to swim, dance, do artsy fartsy projects, and is into all the girly girly stuff. She is always on the go and always needs to be busy. She was approved for a Make A Wish and in Feb '09 our family went on a Disney Cruise for 7 days. She is a wonderful big sister to her little brother who is only 14 months younger then her.
Avrianna is currently in 6th grade at Horace Mann Middle school.  She has exceeded all of the Dr's expectations as she is already a year in school ahead with her age and she still has tested out to a grade ahead of that in some subjects.  She just had her 11th birthday and to celebrate we went on a Carnival cruise to the Bahamas.  She has a gift to excel at everything and anything she does, I'm so proud of the lil lady she has become.  She has been playing the piano since 2nd grade, plays bells n church, is apart of the Boys n Girls Brigade, and Dives with the Fox Valley Dive Team.  Avrianna goes by the name Av now by her teachers and friends and is growing up faster then I can believe.  She will be something/someone special when she gets older, just you wait and see.

I am so proud to be her mother! Look how much she's grown :)

Taken 10-13

Taken 8-11

Pic taken July 2010
Pic 9-09


Pic taken 9-08
Pic taken 2-07

Pic 11-06


Pic 12-03

Pic 11-02
Pic 10-02

My New Dreams

My New Dreams
By Lori Osero mom to two special people

What's supposed to happen now? Where are the emotions supposed to go? Why did this have to happen? How am I going to be able to go on? These are questions that really will never have a straight answer or a right one for that matter. We live life as well as we can and hope for the best, but for some of us there is no best. At least that is what I had thought when my life was at the lowest point it could have.

Your life as you have dreamed has now turned into this horrific nightmare, and you are hoping that someone, anyone, will wake you. You feel numb because all the emotions soaring through you are too overwhelming to except. You are listening to everything that is said hoping that there is a glimpse of good news that might get you through this day, but all you hear is words. Nothing seems to make sense or to be right. You sit and wonder about all the dreams you had made and grieve over them because they were the life you had anticipated and now the future scares you to no end. My dreams died!
No one asks for this, but you become one of the "chosen ones". The ones to love, care, and advocate for our children unconditionally. Is this an Honor? Most days it is but honestly there will be some days you will feel cheated, frustrated, and burnt out. The role of a "mom" switches to become someone that is much more. You almost have to lose part of who you were to become this "experienced caregiver". I am a better person now having to go through all this turmoil, but in the beginning I wasn't sure I was going to be able to be the person that these little bodies would need to survive.

As a parent that has a child with severe brain damage from birth, and another with a hereditary blood disorder I always kid about becoming a nurse without the degree. It's amazing how one can adapt when given a need.
Our story starts just like the movies. It was a cold and windy October morning and 8 weeks before my due date my water breaks. Unsure and scared of what would happen next I was taken to the hospital where this beautiful little girl was born. After a month of being in intensive care to learn how to eat and to teach us how to live with a child that has a blood disorder, they released her into my care and home we went. All night I sat and looked at this little being that was going to require a lot of care and wondered how they could send her home with me. After having to adapt to this I should have know it all.

Gambling with the fact that our next child would have a 50% change of having this blood disorder we went ahead and tried for another, not wanting our daughter to be an only child.
After a hard and difficult pregnancy we decided to induce our labor 3 weeks before the due date, just before Christmas so we would have enough time and be home for the holidays. The labor didn't go as smoothly as we would have wished. Our son delivered fighting for his life. Day after day we were hoping for the best, but were receiving the
worst, first we were told he had sustained a brain injury and more test would need to be performed. Remember this was a holiday week so things didn't move as fast as we would have hoped. On Christmas morning, the day of celebration and family I sit with this little boy clinging to life wondering what next and what did this little being do to deserve this. I was told that day that it didn't look good, if he made it to his first birthday it would be a miracle. That he would NEVER walk, talk, feed himself, or communicate is the bomb that dropped over me on this wonderful holiday season. How is a person supposed to act Sad? Mad? Happy? Guilty? This was supposed to be a happy time. My son was still here so why am I not happy. Nothing could be said or done could make this be better.
As I look back now I find those were all feelings I needed to go through to become the parent that these children need. You need to feel everything to possibly understand it. You will never lose the feelings of grief, frustration, and despair but you learn to enjoy what you have, not regret what you weren't given. My children give to me and anyone else who comes in contact with them something that no other can do an appreciation of life and a new dream.

I have learned in this short time there is a purpose to all this. In myself I have found to be a better person looking at the good and living life day to day to its fullest. Life is so unpredictable and I was naive to that. I have met some wonderful people and gone through things I would have probably never had to endure all because of these two wonderful, beautiful, loving children. I make my life they way it is, I chose to become a better person, and I will live on to keep the legacy of my children alive.

What gets me through life's trials and tribulations is that I am not alone in all this, and there are people out there that need my help and understanding to get through their day. If I can be someone else's ray of hope then to me this is all worth it. In the end I will survive and everyone will know I am and always will be a parent of children with special
needs