Tuesday, September 30, 2008

What a Day!

Ok my day started off pretty relaxed as I has anticipated the day to get "busy" in the afternoon. It definitely did not go as planned but still was very productive. After I showered and got the kids out of the bath I planned on making some phone calls and emails while we were doing school today.
I received an email this morning stating that Avrianna's lab from last week did indeed show antibodies for the Parvo/fifth disease so that means her Aplastic Anemic Crash was due to that bug. We now don't have to worry about her ever getting it as she already got it, that is a big relief. I then called central scheduling to make a consult appt with the surgeon that would be doing Avrianna's gall bladder and spleen removal. I sat on constant ignore (hold) for ever and then the nurse came back on stating:

Nurse -- I see you live in Neenah
Me -- Yes I do
Nurse -- well I just called the Fox Valley Children's Hospital where Dr. Oldham is doing clinic right now, he said he would wait for you if you could get there in the next 15 minutes
Me-- Are you serious, please tell him we WILL be there

Ok when does that ever happen....getting into not only see a specialist the same day but a surgeon. WOW! He was very nice and answered some of the questions I still had for both procedures. I feel alittle better not only with her surgeries but with some of Dan's issues too. Some of you may know but the blood disorder that Avrianna has was inherited from her father. He had a more severe case when he was an infant but with his surgery happening years ago and him not wanting to go into a doctor when he should I got some of those questions answered too. She needs to get some additional immunizations done which are scheduled for next week and then they are requesting another ultrasound of her abdomen (also being done next week) before the surgery. I will be calling in the next few days to see when we can schedule both the gall bladder and probably a complete spleen removal. If they are both done as complete organ removals it can be done laproscopically ie: less scaring, less recovery, but alittle longer procedure time, and higher chance of post spleenectomy spesis (so I will be doing some more research and talking more to Dr Kasper before I TOTALLY make up my mind).
After that appt since we were already at Theda Clark I went up to Rehab to see if they could get Danny in earlier for PT so we didn't have to come back. Again wow, they could get him in. Then realizing I would be late to get back home for speech therapy through the school I called them and asked if we could due a field trip to the school for therapy today as it is right down the street from Theda. They said that would be great! Mr. Scott and Ms Maria sang him songs and helped Danny paint his own paper apple. Danny was very interested in what they were doing and it was great to see Danny's eyes follow what they were doing. Make me wonder how much he can REALLY see. It was fun! WOW - now we are batting 3 for 3 that normally doesn't happen to me, if one thing in the day gets off then it's a snow ball running down hill, but NOT today.
Just as that was getting over with I received a call from Danny's Respiratory therapist that the cough assist is in and he would like to drop it off, GREAT! I'm on the way home. I just had to stop in and get my new glasses and I then I would him at the house. Another big piece of equipment but if it helps. I didn't see any discomfort from Danny when we tried it out on him but again I didn't see it helping him cough either. So we'll see.Danny is doing well....I think all of the junk is stemming from allergies as he doesn't act like he has a cold. I think he just accummulates all his sucretions and then when he gets over loaded he doesn't know what to do with it. Most of today he was prefect. It's probably because we got this new machine here and he knows it so he's going to be on his best behavior, what a stinker, but if just having it my house wards off all evil (quote Dr. K) then let it be. LOL
I also called and Danny's new wheelchair and floor sitter are in, except for the head rest. Once all the pieces are in Mike will bring them out and Danny will be riding around in his new wheels, Yay! I'm so excited as the old chair just isn't doing what it should anymore. I will take pictures of him in his new wheels.
Unfortunately with the unplanned hectic day I was unable to go out and watch the blasting for the basement, but it was a very productive day and it amazingly went VERY smoothly. So we stopped at the golden arches for a happy meal for Ms Avrianna, a shake Danny can sneak some tastes, and a mocha coffee for mom and we're going to sit and relax the evening way.
Monday is our first homestudy home visit with the new adoption agency. I am so excited that our adoption journey is starting again and on a good note. Another strange small world thing. This weekend I met a women who comes from the same country and has the same name the lil girl had that we tried adopting this spring. Just made me think about her again!
I hope all is well with you. Take care!

Busy, Busy

Well do to Danny's crappy sounding chest yesterday morning I canceled his water therapy. He loves being in the water so felt bad that he didn't get to go. The cough assist machine needed to be ordered as they didn't have one in the warehouse so it should be here some time today. Still no fever yet so we are doing well with that. His stats are up then down throughout the day but did well on just the bipap last night so I didn't need to bleed in any oxygen. We did Mr. Jiggles alot yesterday and will continue to do so today. With him not having a fever and being able to maintain his stats I'll have speech come over today as scheduled and I'll see how that goes to see if I bring him to PT after that.
Ms Avrianna is one tooth less this morning. She lost one of her bottom teeth yesterday was up early with excitement to see what the tooth fairy brought her. WOW! I remember only getting a quarter and that was for the bigger teeth, economy, LOL.
Today is the "BIG" blast for the basement of the new house so I am going to try and get there and take some pictures. Something you don't see everyday and it will be fun to be able to say I got to see them blast. Not sure when they are going to do it so hoping I will be able to get there as Dan left this morning for a week up North to the shack so with our daily schedule, Danny being off, and not knowing exactly when it's going to happen I hope things coordinate well.
My new glasses came in so I need to get over there and pick them up also. Never gets boring around here let me tell you.
I've been doing alot of research and talking in depth with Dr Kasper on Avrianna's possible surgeries to see what is the best route to go. I haven't made any definite decisions yet, but I think I'm getting closer. With me homeschooling her she has a better chance of NOT getting the bugs and virus' that lurk the schools. I'm so VERY happy I elected to homeschool her.

Monday, September 29, 2008

Season's Here

Well yesterday my lil man decided to sleep in till 12:30 in the afternoon and was sounding noisier then "normal". Now today he is up and VERY VERY wet. It sounds at times like he is gurgling water in the back of his throat and his chest sounds like a rattle. I have done Mr. Jiggles twice already today and it looks like more is in his future for the day. No fever yet, but his stats are continuing to slide, argh!!! I have been in contact with Dr. Kasper and he has ordered an new machine to be delivered to the house today.....the cough assist. Get ready, Get set, here we go! I love this season, NOT! Now is going to be the BIG tests to see if Danny can maintain a good airway or if the trach is more of a immediate thing. I was so hoping we wouldn't have such a hard season with all the sickness he had over the summer, but I guess this summer was just the start and I should have known better. I will update later with how the cough assist does.

Saturday, September 27, 2008

He's my Son

I found this song on another friends site and just had to share. Please watch!

Here is a moving story. Called 99 balloons about a little boy named Elliot

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

Friday, September 26, 2008

Stressful day!

Sorry I didn't update yesterday when I got back from Milwaukee....but did I tell you I HATE driving in Milwaukee. The start to the day wasn't too bad, but as the day progressed I just wished I was home. When we left at 11 I had thought I would have gotten there early to catch a bite to eat and possibly get in alittle early so I would be home for Ms Avrianna's 1st new season swim lesson. But no go! My 1 hour 15 minute drive ended up turning into 2 hours due to road construction in Fond du lac and taring in Milwaukee. I ran thru the hospital and made it there right at 1, whoo. The appt with Dr D'Adrea went well she was so happy that Danny is now on the Bi-pap all night every night and that the pt vest is working well for him. She is still concerned that is still is getting the pneumonia's but is alittle comforted that the recovery time is less (but none the less he is still getting them). With every pneumonia he gets more of a chance that he damages his lungs more and that the one (it only will take that one) that will take his life. So with that said and also the concern that Danny will "pause" with his breathing 1-2 times a day she brought in the tach nurse to sit down and talk with me, so I'm better educated with the whole thing. After see the trach and hearing the WHOLE process I'm still on the fence. I know, I know many of you would say what's wrong with you! I'm just not sure that these small episodes are warrant enough to change our life around. In some ways yes it will help Danny out but then in others ....constant suctioning, can't go in the water (he loves the water), his little voice will be gone. sigh, where it another foreign matter in his body that can lead to infection, and it's 2-3 weeks in the hospital for recovery. Even the doctor isn't totally satisfied that Danny is at the point in his life that he requires a trach....so I'm chalking it up to an educational thing and we'll see what this winter brings. Also Danny is having another sleep study done in the middle of October so we'll get the results from that and see where he sits with the trach. It's so hard to make this choice (and right now that what it is a choice) as there is soooooo much gray area. Dan and I have agreed that if that is what is needed we will go ahead with a trach but we've decided (as a long time ago I promised Danny I would never have a machine keep him alive) not to vent if that time ever came. He has had such a difficult life and to keep him here with me I don't think would be fair. If things were different and he could function like a normal child or if his cognition was there then this would be a different decision. But to continue his suffering I just couldn't do it (even though my heart would want him in my arms always!!!) Ok enough of that we are NO WHERE close to that so, that's enough! To continue on my day after the appt and meetings with the trach nurse I headed out the van, I LEFT MY LIGHTS ON!! So the battery was dead! ARGH, so I was feeling like a total putz and knowing it my own fault for leaving the lights on. I sat in the parking lot for 45 minutes before security came and gave me a jump. Then to deploy the lift, there must not have been enough juice in the battery as the lift was dead......GREAT! I had to figure out how to manually override the system to get my lil man in the van so I could GO HOME! The security man was so helpful, once he got there, and tried to help me out. While another 30 minutes later and we were in the van and I just wanted to cry. The drive out of Milwaukee was much better but due to the delay in leaving it put me in Fond du lac during rush hour in all that construction....so we sat there on the road watching TV as we were at a stand still for ever as I watch the gas gauge go into the red, oh no! I didn't run out of gas and got to an off ramp in the nick of time, took a deep breath and heading back home. We got a bite to eat with Dan and Avrianna before I came home (I wasn't cooking). Came home put my jammies on, grabbed a glass of wine and watched Grey's Anatomy. All my shows are coming back, Yay! Danny and I love to end the day rocking in the chair watching our shows at night, great unwind time! So my 4 hour, tops, trip back and forth to Milwaukee ended up being 8.5 hours, argh!!!!! Funny cute story though...on the way down I put on our van's TV headphones on lil man and put in Cars and he LOVED IT....he was talking and smiling the whole time. It was awesome to see him enjoying it.
Danny has been up since about 3:30 this morning due to the Bi-pap popping out and blowing in his eyes, argh. So I'm hoping he'll take a nap soon as Mr Dan (PT) will be here around 2 and he wants to take pictures of Danny in all of his equipment for the Danny info book the therapist made. Well it might be of a sleeping Danny if he doesn't take a nap, heehee! In about 2 hours I have Steve Lockhart, the gentleman that made Danny's big boy bed, coming over to go over some ideas he has for Danny's changing tables in the new house. I am so excited! The one in his bed room is going to be sooooo cool it going to look like....can't tell it's going to be a secret so you'll just have to come and check it out when it's done!
Another good note...Avrianna's swim lesson went awesome Dan said. Ms Stacy (the instructor) even said that she has 13 years old that don't swim as well as she does. She is wondering if we are interested in having her on a swim team. WAY TO GO AVRIANNA!
Have a great day and take care. I can only hope today is a better day for me :) I will try and update later!

Wednesday, September 24, 2008

So Mature!

Well Avrianna is SOOOOO excited that her glasses came in early. I can only hope that she keeps up the enthusiasm with wanting to wear them when she has too. She looks go good in them and so grown up. Why can't they stay small?? My glasses didn't come in yet, but should be in tomorrow or the next. Well here she is in all her glory.

Today the reporter contacted me and the article is due to run in the Post Crescent some time mid week (next week). I am hoping she will give me a heads up so I can get a couple extras to save for a scrap book. I will let you know when I know.
Avrianna and I made four loaves of bread today 2 pumpkin and 2 cookies and cream. I can't wait to try them. She just loves to make things, maybe she'll be a baker. She is at Pioneer's right now (kind of a girl scouts) so there is some "quiet" time around here that Danny and I are truly enjoying. Avrianna is always on the go and busy busy (wonder where she gets that from) so it nice to just have some Danny and mommy time.
This morning Danny and I went to PT and he did very well. Aaryn put in new foam into the bottom of his AFO's in hopes that he will not clench his toes as much when in them. So we will see how that goes. Just a note that just FRIES me...I was parked in the van access Handicap parking in the hospital parking lot. Not a sole by where I parked so when I got out a car has not only parked next to me but in the yellow lines for the lift to drop onto. That just pisses me off, not only are there do not park lines on the ground but I have a plain as day sign on the side of the van that states
So I had to pull the van out into the lane, turn the van off, unload the lift, put Danny in, load the lift back up, turn the van back on and go. I know petty but come on!! I really don't like having to block the parking lot up and load him in the middle of it. READ PEOPLE READ! ARGH!!
Tomorrow Danny and I are on our way back to Milwaukee, sigh, for a follow-up with Pulmnology. Hoping that will be a nice and quick visit but after the last visit with Ms Avrianna I am not assuming anything.
Here is the picture of the race car that was taken in Michigan.

Dan in all his glory!!

Tuesday, September 23, 2008

Update Finally

Well it's been awhile so warning this is a long post...time flies I guess! Let's see where to begin....Saturday Dan turned another year older so we gave him a call at the race track to wish him a happy birthday and good luck racing for the day, yeah September is big for our family with both our birthdays and our anniversary in the beginning of the month. Saturday the kids and I went to the local fire station as they had a safety thing going on. The weather was great and the kids has a nice time. Avrianna was so excited she got to go into a smoke house and she got to look through special binoculars that allow you to see in smoke. She said it was really hot in there and very smokey.
Sunday Dan came home from Racing in Michigan. It was a great time he said and he thinks next time we all should go as it was a very nice facility to be at. I believe the WIR team took place with in the top ten. Dan was able to get to know some of the "regular" guys from the race track better and he said he was happy he went. They took an AWESOME picture of the car taking off at the line (front wheels up and the rear tires wrinkled from the force) I am going to try and post it on here later.
Monday Danny had his first day of water therapy and he LOVED it! He was all smiles in the water. It's so good to get him back in the water, as he seems to "do" more in there. I really like getting him in warm water as there and only there is he gravity free so his little body can take a break and just float, plus he is off his butt for awhile. It's got to be uncomfortable to be on your butt all the time! I also got the lab result back that he had a while back. Most everything looks good. His protein was better then last, his seizure meds were at a good level, but the med that counter acts the seizure meds side effects were low. So I am increasing that one to a three time a day med too and then we are going to redo labs in a couple of weeks. If the levels are not where they should be Danny could get kidney/bladder stones and we DON'T want that. YIKES!
Today....Tuesday, what a day. First I had to get up EARLY to be to a meeting in Milwaukee I was late at getting out the door as lil man felt the need NOT to pee over night or when he got up so after alot of pleading with him I realized he wasn't going to do it on his own, argh, of all days the one I have to be somewhere. Well after that was taken care of off on the road we ALL went. Did I mention how much I hate driving in Milwaukee, I am soooooo not a big city girl. I like being able to get where I'm going in a matter of minutes, but not in Milwaukee I got stuck MILES away at very slow creep due to....what I don't know. So I was late....I hate being late, I felt like a putz! But the meeting went on and the kids were AWESOME!! I couldn't have hoped for them to be that good, WAY TO GO! After the meeting we were off to the Children's Hospital for a routine follow-up with Hematology for Ms Avrianna. I was totally blindsided with this one...I went in thinking this would be a 5 minute look at her and see you in a year. NOPE!!!!! Well the doctor feels strongly that her gall bladder NEEDS to be removed and while we are in there remove the inevitable spleen too. WOW didn't see that one coming, I knew it was in her future but didn't think NOW. Boy this is a whole new ball game, Avrianna surgery? So after the surgery she will be even more susceptible to infection and bacteria stuff as she will no longer the the "cleaning" organ to help her out. Even with it now it is hard on her but it still works to some degree. The doctor wanted to get labs to see how she is doing as her color was "off" and with the yellowing of the eyes. Plus he wanted to pinpoint if in fact her crisis this spring was brought on by the pravo virus or if something else triggered it. Avrianna usually gets a finger poke and out the door we go, not this time. I think the whole floor heard her scream! Boy for a lil girl she is sooooo strong. Trying to hold her down and keep her arm straight was definitely a challenge. The lab tech stated that she is ranking Avrianna on her top 5 list of deafening screams, yeah this is what we get to look forward too. She definitely puts the lab and surgery crap into perspective for me as Danny for the most part just goes with the flow, no screaming, no drama so she makes up for what he can't communicate. So tomorrow I will get the results of her tests and try to start the the scheduling process. WOW two really HUGE surgeries back to back one on each. How in the heck am I going to swing this? Well as you all know I am one for a challenge and I'm always on my game when I have multiple pots boiling on the fire. I'm sure it will all work out but right now alittle overwhelmed with processing it myself.
Tonight we had a meet and greet with most of the sub contractors working on our home. It was awesome!! I feel bad though as I wasn't able to talk with everyone as much as I would have liked, time just flew by, but they all know my face now(good or bad, heehee). I was just floored with everyone and their reaction to my family...most of them even said HI to Danny, that just warms my heart. For you all that walk in my shoes you know how big it is for complete strangers to acknowledge our kids. That means the world to me. I know some were uneasy asking me about Danny, but please don't, I love talking about my kids! I hope for the ones that are now following our story this site can bridge the unsettling feeling and you can see for yourself it's OK to ask. THANKS! To all the came tonight to help start this project off. Today they were out on the land starting to prep it for blasting the basement (we are on a rock bed). I so can't wait to see that....something you don't see everyday :)
Wow alot to process. I think (hope) that is it for now. I will definitely post more often as I guess I have too much stuff going on! Heehee. Please check out Matt's site as he is still in the hospital fighting off some respiratory bug and also Ryan's as I found out this afternoon he was admitted too! ARGH
Take care and thanks for thinking of us!

Friday, September 19, 2008

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!
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!

Thursday, September 18, 2008

Just Another Day


First - please stop in at Matt's site (our CB friend - link to the left) as he awoke this morning very sick and needed to be admitted to the PICU. The parents could use some comforting words right now.

Well today started so so...I had seen a post on another site that makes total sense to me today. Live life in the present, as the past and future both can be sad and frightening. I so understand that! Today I tried to reflect on my life and found myself in tears seeing the what if's and could haves when all I needed to do is look at what's right in front of me....the best kids/miracles a mother could have! They are what makes my life "worth" it. I was one that dreamed of a family from when I can start to remember and now I have TWO. How wonderful and I got to spend the day with them, I couldn't have asked for more. I wouldn't be the person I am today without them in my life! They are my EVERYTHING! Dan called and was so apologetic that the day wasn't "special", but any day that I can spend with my kids is special for me.
Today we went to the mall to get my mom's ring (it was being repaired), to get some aromatherapy stuff for the house, and we ate at Subway for lunch. Then we went to go get Avrianna and my eyes checked out. Danny had a blast, I think he was enjoying the idea he was there just for the ride and didn't have to have stuff done to him. Both Avrianna and I had the full treatment with eye dilation and all. My eyes did indeed change for the worse so I'm hoping after getting my new specks my headaches will subside. Avrianna is also entrying the world of GLASSES. She right now is totally excited about them but I'm sure after having to wear them and care for them they are not going to be so neat anymore. I can only wonder if her major medical crisis this spring helped in her need for glasses. In Jan of '08 I took her in for her first exam and she was ok and now she is in need of glasses due to "weak" focus muscles. The doctor mentioned that if she should have another episode she needs to come in earlier but every year should be just fine. So I'm concerned that her blood disorder or the trama her body deals with having it is causing her eyes to become weaker. Her eyes are always yellow do to the jaundice and anemia that her body has on a daily basis so maybe? Of course I didn't wonder this till after we left the office so I will be asking the Pediatrician if their is issues with eye sight and having HS. She picked out pink ones so I will post a picture of her when they come in. She also has two loose teeth! My little girl is growing up, sigh.
After the eye appt we came home and Danny had OT. Today I put him in his stander for his therapy and he was having a good time. Ms Kristi had him paint apples on a tree with an apple stamp. He was smiling and even vocalized for her, WOW, so I think Danny will do better for her in his stander during OT time. After OT the kids and I went to Walmart to do alittle shopping and to just browse around. Avrianna picked out one of those lil cakes for my birthday cake so we went home, put a cande in it, and ate it with just us three....yeap had to give lil man some frosting. Last night I gave him about 7 (of his spoon fulls) of banana pudding and some pumkin ice cream and he did GREAT with that too.
Hope all is well! Live life for today as you can't change yesterday and you never know what tomorrow will bring. I love Blue Roses, they are my favorite flower and happened to come across this so I would like to share.

************************* BLUE ROSES ******************************

Why do I always have to be the one that starts to do laundry and there's no detergent? Well, I guess it was time for me to do my store run, which included light bulbs, paper towels, trash bags and Clorox. So off I go.

I scurried around the store, gathered up my goodies, and headed for the checkout counter only to be blocked in the narrow aisle by a young man that appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged, and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Hal."

"Hal, like Halloween?" he asked.

"Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle. "You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him. I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit.

I told her that there are plenty of red, yellow and pink roses in God's garden, however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a "Blue Rose" and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion but I sure love living in God's garden."

Please the next time you see a BLUE ROSE don't turn your head and walk off, take the time to smile and say Hello. Because by the grace of GOD this mother could be you. This could be your child, grandchild, niece, nephew. What a difference a moment can mean to that person or their family.

From another old dandelion.

Live simply. Love generously. Care deeply. Speak kindly.

Leave the rest to God.

~Author Unknown~

Wednesday, September 17, 2008

Another Year Older

Well in less then 2 hours I will be another year older. WOW does time fly! I always said that if someone would have told me years ago that this is where I would be at 34 I would have laughed in their face. But today I can say I am a better person! My children have shown me how to become a better wiser and now older woman, LOL. I guess you need to be young and foolish to become older and wiser. Well I will be spending my day with the kids and then possibly a friend and her daughter will come over at night for dinner and a movie here at the house. Avrianna and I have to get our eyes examined and Danny has therapy to.
Yesterday Danny got to meet his new Speech therapist and she seems to be pretty comfortable in working with Danny. I got to pull out some of the stuff I have here at the house that they can work with him on so they have an idea of what they need to bring out if they need it. Danny seemed to be quite engaging with both the Speech therapist and teacher was makes me VERY happy. Today Danny had PT at the hospital and he was surprised as the therapist we has thought he was having was out on leave so he got to play around with the other. He tolerated PT pretty well with his head control and he seems to be interacting more with her. He even sat upright more in his wheelchair for a longer period of time, Yippie! He did have 3 seizure episodes, but nothing to get excited over they were more of a eye tremor thing so I'm hoping it is do to the lack of sleep (as he felt he needed to be up again at 5:30, yikes). Tomorrow is OT here at the house and then PT here at the home on Friday.
Dan is off racing and the only hiccup right now is the difficulty of getting through Chicago as he heard the major Highway is out due to the flooding from Hurricane IKE. I hope he has fun and does well racing as his birthday is on Saturday so he should have a wonderful time spending his day doing what he loves to do!
Avrianna received a phone call from the Make A Wish program yesterday....it looks like she is not going to meet Miley/Hannah Montana as Hannah has "closed" her wishes for this year. She is only seeing 8 more kiddos this year and Avrianna is I think # 16, so she would be able to meet her but it wouldn't be into Spring/Summer of next year. Avrianna has decided to go with her second wish which is to go on a Disney cruise with a princess and be a princess! I think she will have a blast. So we are now back waiting for the paperwork to get processed for the "new" wish. I will keep my eyes open and when Hannah is coming close to town for a concert maybe I can get tickets and back stage tickets.
I hope all is well with you, Take care!

Monday, September 15, 2008

Beauty Sleep

Well my lil man thinks he needs to "party" it up early in the am hours and then sleep when he should be up. Today he slept till 2pm just enough time for me to get him showered before the vision therapist came over, this was her first visit back for the school year and I couldn't let him be the stinky kid, lol. With all those zzzzz's he woke up in a very good mood. He is smiling, vocalizing, and even moving his arms and legs alittle. Of course this is all after I told Deb (vision therapist) that he has lost alot of what he had started to "get" from therapy last school year and the most evident lose is alot of his purposeful movement. Not sure if that is due to the ITB pump or the amount of seizures he has had this summer. I know the biggies can "wipe the slate clean" and he would need to relearn most things. But I will take him proving me wrong when he does all the good stuff! Tomorrow Danny is going to meet his new Speech therapist as she wasn't able to come at last weeks therapy. So it should be interesting to see his reactions as both the teacher and speech therapist tomorrow are new. Danny tends to be on the more reserved side when it comes to new people, again he'll probablyt prove me wrong, but I'm ok with that.
Of course after I took his pictures the other day he was smiling from ear to ear for his dad, ARGH! Well his is handsome either way smiling or not.
It's ours, FINALLY. We closed on the land early this morning. Tomorrow the contractor is going to pull permits and then their off in making our Dream Home come true.
Dan did very well at the races yesterday. They are now racing on Sundays. He is going to Michigan for a big end of the season race this week. So no racing this weekend here, but I think he has one more Sunday left and then racing at WIR is done for season. He will be gone for 5 days racing in Michigan so I hope he does well and has a fun time with some of the other racing guys. I will keep you posted on his results.
Finally the weather has started to cheer up alittle. Thanks to IKE!! Amazing how we here in WI still can get bits and pieces of it's leftovers. Unbelievable how must destruction can occur. This week is suppose to be wonderful weather wise so I'm hoping we can spend most of the days outside enjoying the fall days before the snow comes knowcking on our doors, yuck! Take care

Saturday, September 13, 2008

Lil man's pictures

What else to do on a crumby rainy day but to take pictures of my lil man. That just brightens my day :) LOL! I couln't get him to REALLY smile but he corporated for it all. What a handsome boy he is, but I guess I'm partial! I just love him so much.. I'm so proud of all the he has acheived in his life. Way to GO! We are one, conjoined if you will, I've never been away from him for more then a couple hours. Where ever I go he goes and visa versa! I just love to show him off, I mean who wouldn't with those cheeks, HU? Gotta love them!! These are a few of my favorites I think I took 50! Wow he is such a trooper.

I went to check to make sure I had some AWESOME pictures and when I returned Bailey made herself comfy and looked over lil man for me. I so LOVE my FAMILY!

Today is Lilie Clarks Celebration of Life Party. Please keep her family in your thoughts today as this has got to be a difficult time for them. I was truely blessed to have followed her story through the web. What a great family they are! You can still follow them on their web click on the link to the left.

Please feel free to comment or leave a message (click on the comment link below each entry) to let us know you stopped by. I fixed the problem on the comment page so now anyone can leave messages, sorry. Take care!

Friday, September 12, 2008

Hip surgery

Well the date is set. They called back and Danny is scheduled to have his hip surgery on Jan. 2 '09. Not a good way to start off the new year, ARGH! After talking with a good friend earlier this week about her son's surgery I'm feeling alittle better about it. I can't only hope that this will decrease some of the discomfort he maybe having and not add to it!
I was going to try and do some pictures of Danny today but he woke up early and looks tired, plus his nose is alittle irritated from the bipap mask last night. So I'll try a different day. So not too much to report today but that's not a bad thing. Weather has been pretty overcast the last few days so we've been spending our days mostly in doors. Hope all is well with you!

Thursday, September 11, 2008

Avrianna's 1st grade pictures

Here's my baby's first grade picture we took this morning. What a ham????? I am so proud of her....she has become a smart, compassionate, little girl. I can't wait to see what she's going to be when she grows up....a great attorney as she sticks to her guns or an actress as she tends to be somewhat of a drama queen, that's what I'm invisioning for her. I can't decide which one I like the best so here a few of my favorites.

Wednesday, September 10, 2008

Busy, Busy

Wow I haven't posted in a few days. Well Sunday I realized that this week is the start of our "normal" schedule. Which means I will have someone coming into my home at least once a day to do therapy with Danny or I'm running either kid here or there for other activities. So I got this wild hair up my butt to tear apart the house, clean it, decorate it for the fall, and put it back together. NUTS!!!! Well it got all done Monday night (what a way to spend your anniversary, hu?) It's done and I feel better about having people coming over when the house has had a "BIG" clean. I love this time a year! The weather is cooler and for Danny that's that bomb, plus I have people coming over so I can have some "adult" conversation (I know that are here for Danny, but they are emotional therapy for me as well), and the oven comes out of hibernation and watch out. I love to bake and cook so I'm always doing something in the kitchen not only does it mean nice warm meals but my house smells awesome. Pumpkin cheesecake here I come, heehee! I love this weather!!! Tonight my family is getting together to celebrate the birthdays of September, we did have it planned for Labor Day but schedules didn't allow that to happen. Pizza, beer, and birthday cake, now isn't that any great way to celebrate. Yes in one more week I will be turning another year old, ARGH!
Danny got to meet his new teacher yesterday along with PT Dan. I'm so glad that Dan is back with Therapy as Danny really seems interested when he's around so with the new teacher being a male maybe we will get the same response. I hope! OT is coming out today, swim starts on Monday, and I haven't meet the new speech therapist yet but she and the teacher will be coming out on Tuesdays. PT with Dan is on Fridays and through the hospital I have it once a week when it allows. That's just Danny!! Avrianna and I do school work about 2 hours of sit down a day, then projects, she has swim on Thursdays, and Pioneer Club on Wednesdays. She would like to start dance again but not finding it in the schedule, I'm sure I will make something work.
Next week they start breaking ground on the new house and I can't tell you how excited I am! I will be going out to take pictures of the "land" and then keep going as the project is under way so I have a picture diary of all that is going on. I just got done planning a meet and greet party with all the contractors working on our "Dream" home so I can personally thank them before we get too far into it. I will post pictures so you can see how things are going too.
Please still keep Reese in your thoughts as she is still fighting! Her family is going through a very rough time so stop in their web page (link is on the left) and give them some words of comfort.
To leave comments on their page as well as this one you click on the comment link under each post (as it's alittle different then the CB site we had) So you can post that you stop by in our guestbook on top or reply/comment to each post.
Hope you are all doing well. Take care! Oh yeah go into Danny's equipment link (on the left) I have added new photos of his stuff (bipap, lift, mickey button & pump)

Sunday, September 7, 2008

Make A Wish Walk/Run

A HUGE THANK YOU to all that supported the Osero's and Niemuth's in the Make a Wish Walk/Run. Our final total was $1305.00, WOW! That is awesome! The weather held out and is was a great time by all. I think we are going to make this an annual tradition for the Osero's. Here are some pictures of the crew. We also had a newspaper photographer following us the first half of the race as in early October the Post Cresent is going to be doing an article on Connie, Griffin, Myself, and Danny. I will let you know the details so you can keep our eyes out for it.

All the Wish kids that participated in the walk!


Dan, Avrianna, and Rhiannon heading our pack.

Here we are!!!

After the walk we all went home to rest alittle as the whole family felt the need to be up extra extra early yesterday. Danny and I were up at 4 as the Bipap came out of his nose and was blowing in his eyes (it happened yet again this morning too, so not happy about this, ARGH!). Avrianna was up by 6:30 and all dressed ready to go walking. Dan was up by 5 to pack up the race car so when we got home from the walk he would be all ready to go racing. So needless to say there was no reason for us to be late. We ended up getting there early then I had planned so Avrianna was able to do the Kids Dash (which she had a causality and fell, but recovered well).
Here's a recent picture of the car! And he did well at the races last night.

After Dan took off to go racing the kids and I went over to Connie's to chat and visit. Our couple hours turned into 6.....THANKS Connie for the wonderful hospitality, I needed to get OUT and chat it up with you. What a wonderful (long over due) time together.
Please keep Little Miss Reesie (one of the kiddos I follow) in your thoughts. As in the last few days she's gotten some infection and is now fighting for her life. The family feels that she is coming to end of her young life and might be earning her wings soon.
Thanks to all that support and follow our story, it really means alot to us!

Friday, September 5, 2008

Another appt!

I took Danny in to see Dr. Kasper this morning. He still has alot of tone, a high heart rate, and crying out more then not. Good news for the day is his white blood count is down so the antibiotics are working, but they also are "running" through him if you know what I mean. The diaper genie is getting a work out, LOL! We are increasing the clonezepam (muscle relaxer)again, but only during the night. With Danny tolerating the Bipap better increasing the med at night seems to be the best route, that way if his airway would collapse or obstruct he has the bipap to help him out. I'm crossing my fingers it's not going to be to much of an issue. Yesterday he woke up gagging and wretching at 5:30 and this morning he was up early too and miserable. So that's why I took him in. Dr. Kasper thinks it's more of a snowball running down hill with him. Danny having more tone (for whatever reason, maybe pain) then is increasing his heart rate, which makes you breathe faster, and Danny can't get rid of excess air (from breathing faster) due to the nissen so he retains it all in his little belly causing him to gag and wretch. ARGH! So I have made the call for Ortho to call me back about scheduling the hip surgery. I know it could be the cause for his discomfort so I am going to start ruling things out. I wish he could at least point to where it hurts instead of me trying to figure it all out. I am going to talk with one of friends who just went through the surgery so I'm more informed and comfortable with the cares afterward. That's my biggest concern is the after math as I have full confidence in the ortho doc doing the surgery. I also had Dr Kasper do some more labs while we were in checking out the level of his seizure meds and a full metabolic panel to make sure he is getting enough in his feeding that his body required. With Danny only getting 16oz of food a day I need to watch that close so he doesn't lack anything his body needs.
Tomorrow is the BIG day on our Walk/Run with Make A Wish. Thanks to all the supported our team "Touched by an Angel". I wasn't able to get the total count before they closed the site but I believe it was VERY close to $1300.00 I will post the total when I see it tomorrow. You ROCK, thanks again for helping make Wishes come true for these kiddos. I will post pictures after the walk. The weather looks like it will hold off for us during the walk but for the afternoon when Dan has to race looks like he might get damp.
Thanks again for your support and following our story. Take care!

Thursday, September 4, 2008

Ok I know I try to be rational on things, but this hip thing is giving me grief. I have all to information on how his hip is effecting him now and how it should effect him after the surgery, but I still can't get myself to pick up the phone and make the date. I guess with the last surgery on his ITB pump it has made me gun shy with all this. That was complete hell for Danny and myself and not to mention to results weren't really what I was anticipating with the added issues that weren't told to us catheter slipping, floating puck, yadda yadda yadda! ARGH. With Danny only have one hip being out it is actually worse then if both were, cuz at least the pelvis would be more leveled out with both out. His being only one he sits "off" causing his back to curve more, and then making it uncomfortable and harder to breath. So theoretically when the surgery is done he should sit straighter being more comfortable and breath better. So what's my problem?????!!! I am going to try and schedule it soon. There are more pros and cons so I just need to bite the bullet and do it. I posted a new picture in the link for Danny and his equipment as today he got freight train leg immobilizers when in PT. He's not too sure about them yet but it makes transitions in and out the stander easier and to stretch out his hamstrings more.
I got some more calls from the school therapists today and the calendar is filling up. So far I have heard from vision, PT, water and OT. So exciting to get them back and then Danny can get a REAL work out. Watch out now Buddy, LOL!
Saturday is our Make A Wish walk/run and I'm so excited to participate in it. We will be accompanied by Danny's BFF Griffin and his family.

It will be good to get together with Connie and her family. This summer has been so NUTS I haven't been able to get out and just hang out with my friends. I'm hoping Danny will corporate enough so we can have a good time. If you haven't yet please support us in our walk to help make children with life threatening disorders have their wish come true. Click on the link to the left, the last days to pledge us is Friday! I will post pictures of us later on Saturday, I hope.

Wednesday, September 3, 2008


6:45pm our dear CB friend Lilie Clark at age 22months earned her angel wings and is now healthy and whole with the other angels. Please click on her link to the left to follow her story and keep her family in your thoughts and prayers tonight.

Today Dan, Danny, and I went to Milwaukee to have a chat with one of his doctors in Rehab. Danny hasn't seen him in a long while so I wanted to get him up to speed with all of Danny's issues and get his opinions on them ie: trach, hip, back, ITB pump, and tone issues, yeah I know alot to go over in one visit. But he was wonderful in helping us plan for a quality of life for Danny and to help us help all the doctors work together. So I'm looking onto his shoulders for some coordination and guidance with all of this. He applauded Dan and I with such a good job we do with Danny, so that made me feel good. Then on to the issues at hand as we all know this summer hasn't been an easy one for us. The trach thing is on the back burner right now but he is refering my to some one to get more info on it and how it would effect Danny life if we should choose to go that route. With the Baclofen pump there isn't too much to dwell on with that as even though the neuro surgeon in Milwaukee put it in I have Danny's Neuro doc maintaining it so with all the political crap one doesn't want to step on the others toes. I did voice my opinion on how it was to help Danny's quality of life and for the most part it has but with added issues as the catheter continues to slide down his spine (wasn't anchored properly) so the benefit that Danny was suppose to get from the medicine isn't what/where it's suppose to be and the puck floats (also not properly anchored) so it gets caught up in his ribs or sits on his hip causing pain. We discussed Danny's hip and with further talking about it I think it is important that we get it fixed as soon as possible. Unfortunately it took into the start of the school year for me to figure it out, but with all of the summer's medical surprises I guess I'm glad I didn't do it. So I will be calling soon to get that surgery rescheduled. Right now we are to sit and wait till his back starts to curve more (as it's been stable for 6months now) and it will. Then look into having the VEPTR procedure done. WOW that's alot to take in on one visit, but came out informed and READY to take on what comes our way. It's nice to know that now when I'm down in Milwaukee I have someone to lean on the is watching our backs and has the WHOLE picture in mind with Danny so he can be the "coach" if you will to all the other team members.
Today I started getting calls from the school therapist so I'm so excited to get them over and Danny back in the routine. WELCOME BACK!!!
Don't forget Friday is the last day to support The Osero's in the Make A Wish walk/Run so please pledge us. You can help make a difference in a child's life. Give them the opportunity to make their wish come true. Thanks for helping out in such a wonderful cause. Click on the link to the left and that will get you to our team page and you donate online.

Monday, September 1, 2008

ER visit

His face just says it all....Poor thing!

Well I ended up having to take him in. He FINALLY woke up around 5 and was miserable. I called Dr Kasper up, yeap on a holiday at home he rocks, and he thought it would be best if I took him in and they checked him out tonight to be safe. They ended up doing a full work up on Danny and found he has Sinusitis and Pneumonia in the lower left lobe. So after 3 hours (not bad) in the ER we were sent home with an antibiotic and to sleep in the comfort of our own beds. Unfortunately this summer has hit Danny very hard with respiratory stuff so I'm so not looking forward to this fall and winter. ARGH! Well heading off to bed it's been a long day just wanted to let you all know what's up with little man. Take care!

Sleeping Beauty

Well Danny fell back asleep around 9am and is still out (its 4:30)! So we all know how tonight is going to go for me. I guess it's ok obviously he is sick and fighting something off but I get real nervious when he does this. His heart rate has come down some but still too high for him. I haven't heard anything from the doctor but I really haven't sought him out either. I guess I'm going to just let him sleep and call tomorrow when it's not a holiday. Unless he wakes and is miserable then off to ER. I have gotten most of the stuff done today with him sleeping so I'm sitting well if I need to bring him in.
I picked up our van last night on our way home and the new lift was put in. It looks like it is going to work nice not only for Danny but for the whole family. As this one doesn't take up the entire entry way so no more tripping over the darn thing. There was just a few service issues that need to get resolved, but other then that I'm hoping this is the end to a very long issue with lifts. Yay!!
Here are some of the pictures taken over the weekend. Enjoy!
Continue to keep Little Lilie Clarks family in your thoughts as her journey on this world is closing coming to an end. Click on her link to the left.
Please don't forget to Pledge us in our walk for the Make A Wish program this Satruday. All pledges should be in by Friday the 5th. We NEED YOUR SUPPORT! Click on the link to the left. Thank you!

Picture of the Mines. Danny wasn't able to go along so Grandpa Rick tooled around with Danny so I could go with everyone, but we did get a picture with Danny and all the kids. Way to Go Grandpa Rick!

Avrianna enjoying some time on the rides with Grandpa Rick and Laurie

Grandpa Rick made sure Danny was always moving and tried to keep him in the shade.

Grandpa Rick pushing Avrianna in the swing

Danny in Grandpa Rick's Air chair...This was wonderful!

Labor Day!

Well Danny knows it's a holiday. We are awaiting a phone call from his pediatrician or we're heading to ER. He did ok up in the UP. I'm so glad we decided to head back last night or this would have been more of a challenge in no where land. Yesterday he slept till 12:30 and I have to increase his oxygen that is bleed into the bi-pap to keep his stats up. Then when up he was miserable crying, whinging, and flushed. Last night his heart rate was just racing about 130 at sleep (his usual is about 40) so I knew something was brewing. He awoke this morning foaming & spitting from the mouth, heart rate was in the 170's, face is flushed but his legs & arms were freezing. I think he is now just hot all over, ARGH! I am going to give him a shower and await the call. I am hoping he'll do better after the shower, but it's a holiday and we ALWAYS spend it in the ER or hospital. It's just a given I think that is how he likes to celebrate the holidays. We need to talk to him more about that, LOL.
Up in the U.P. was relaxing except trying not to get stung as the bees were terrible, I've never seen so many! We went to the Dickinson county fair and went into a Mine. Which was so cool, I've never been in one. I will post pictures of Grandpa Rick and his grandkids as soon as Danny gives me a break! LOL Take care
Please keep one of our CB friends in your thoughts as she is on her way to earning her wings VERY soon. What a strong family and a beautiful litle girl. Click on Lilie Clarks link over in the Links I follow to the left to follow her story!