Better Days at HOME

Danny has been lounging around at home.........While Avrianna keeps him occupied ~ I LOVE watching these two :) What a great relationship these to have. They both adore each other :)

Life has been pretty hectic around here the last week. The beginning of the week was brutal with Danny rapidly getting sicker n sicker. UGH! Gail had her work cut out for her on Mon and Tues of last week. Danny was HIGH MAINTENANCE with needing to be suctioned constantly, gut issues, and doctors appts. We managed to keep him at home from any hospital admissions, but it was getting pretty close there for a few days. WAY TO GO ALEANA n GAIL!! We are still waiting to hear from CHOW to see if Pulmonary wants to have Danny put on Cpap over night and when he's sick to help keep his lungs open. One of Danny's issues is he's shallow breathing which allows areas of his lungs to get atelectasis or collapsing of his lungs. The ONE thing Danny has going for him is that he does have "healthy" lungs it's his muscle tone that isn't helping to clean the lungs out. Seeing we already bi passed his upper air way issues with the trache now we might have to help him clear the lungs better with the Cpap. It's alil scary as this means a ventilator. SIGH ~ I'm sick to my stomach. I know it's just another step in the forever lasting path of Danny and really I'm ok with it, but it's a VENT, ugh. It's amazing how through the "Danny" process the train of thought changes....all for the good :) But I can remember how I thought NO WAY a vent and then I've met these wonderful children that have vents and maintain and great life style. Now I'm still for no vent IF Danny isn't Danny anymore. God forbid something should happen and his personality and thrive isn't there anymore then I couldn't let a machine keep him here just for my self reasons. As long as I see the fight in him and will FIGHT FOR HIM!!

10.5 more days of school BUT who's counting. YIKES! Avrianna can't wait! Danny is already done with school. With him being so ill I cancelled therapies for the rest of this year for him to recover, but boy do we miss the therapist's. The last few weeks Avrianna has had alot of fun projects to do at school. She just did a learning box about the state of Tennessee and went in front of the class to talk about what she's learned and enjoyed about the state. She was excited she got a state that we drive through when we go down to Florida (We are planning on 3 trips down to FL next school year ~ YAY). Today she has a skit to do about the precipitation stages so this weekend we were making clouds and raindrops to go with her speech while her partner made a sun and lake. I hope they do well. Next week they have an ice cream social at school and then the day before the last day Dan and I volunteered to go on a 3rd grade field trip to the Milwaukee museum. God help us, LOL! I've never been there so I'm excited to go....just not the bus ride to get there. Then the summer break is here!! Avrianna is going to busy with Drama, Girl Scout camp, and having her cousin here for almost a month. We are taking a family vacation to St Louis..camping out at Jellystone Park, going to the Arch, Six Flags Great America, and what ever else trips our trigger :) Danny just behave himself!! We are going without any nurses.

Yesterday Dan started to plant the Osero Organic garden 2011. He got it about half planted before the storms started to roll in. Now to wait patiently to reap the benefits of having our own garden. While Dan planted the garden I moved the lawn, Avrianna went swimming in the pool (YIKES ~ it's not heated yet and COLD) yeap she is NUTS, and Danny supervised with Gails assistance. Somehow I was the only one that got burnt...I mean SCORCHED! I'm going to have to check to see if any of my meds have sun burn effects cuz ...... WOW I'm red. I was only out for around 3 hrs on the lawn mower but it looks as if I was out for 3 days. I hope it tans and it doesn't peel. I have to do my annual check over with my dermatologist on Thursday....I don't think he's going to be impressed with me. Whoops!

More tornados were storming through the area and in other states yesterday. My thoughts in prayers are with the families that were effected with the storms. I can't believe the severity of the storms not only already but just this year alone. I can't remember being in the basement this much....once a year, maybe twice. BUT we've been down there already 3 times and the season has JUST begun. UNREAL!!

Stay Safe

Picture Catch UP

For those of you that don't follow us on Facebook....here's the picture catch up from our latest hospitalization for you guys. The connectivity at the hospital limits what you can do ...I could post but not post pictures. So here's a recap!

Looks like he had a rough night. We are still in Theda ER waiting for the transport team to pick us up. Protocol is the receiving hospital picks up the patient so we waited at least 2 hours for the ambulance to come. Just enough time for me to go home and pack. The black "bug" in the middle of his chest is his med port. First time it was accessed and it was a success!
Danny's first set of Xrays....the right lung (left side) lower lobe has a significant cloudy spot which takes about half of the lower lobe.
All strapped in and ready for the ride :( I was with and sat in the front seat

Ugh!The ambulance is all decked out ~

Hooked up to the vent.....for 2 days :( .... and yes I got alot of grief for this one ~ Danny having peach fuzz above his lip.....so once we got home ~ I shaved it off. SIGH ~ shaving my 7yr old. Now there is something wrong with that!

Sitting up in the lounge chair....I think he likes it :)

We even got Danny outside for a few minutes. We didn't have HIS chair (when you come in an ambulance the wheelchair doesn't come with) so we improvised with a "regular" one. Where there's a will there's a way!Still sick but still smiling....what's with my Lil Man. He's such a trooper!Chill'n out for the day in the chair with my Lil man....4 days into the "trip", boy it does wonders on a body ~ WOW look at those bags under the eyes. Those darn couch/beds! Poor Danny is so pale here :(
After 6 days down at CHOW he is finally home...still not great, but we're working on it! Avrianna missed Danny so much!Today we've hit some set backs on progress but it's not too far. Danny has been tugging pretty hard to breathe and there are some wheezy sounds in his lungs. More breathing treatments and he is stuck to the oxygen machine!! This morning he wasn't a fan of his g tube feeds so we had to turn them down. Never a dull moment around here! It's me and Danny this afternoon n evening so we are going to do some snuggl'n on the couch and just "relax" (I hope). I'm going to take Avrianna out for some Mommy n Me time tomorrow..... Just her and I for some retail therapy ;)

As you can see I had time to do some blog additions and face lifts. Hope you like them!

PARTY!

Well Danny's sputum culture crew out 3 different bacterias (sigh) how many are going to party in his trachea. He grew out Pseudomonas and Yeast by Sunday evening and by Thursday a third germ joined into the party called Klebsiella Pneumoniae. So now Danny has three bacteria diagnosis on top of Pneumonia and Tracheitis. Danny got a general IV antibiotic and a big dog IV antibiotic in the ER room at Theda, when we were transferred CHOW he was put on another big IV antibiotic in addition to TOBI ~ an inhaled antibiotic. Thankfully the antibiotics that he was started on worked for all three germ so we didn't have to change it once again :) All of Danny's breathing "treatments" have been doubled too so I think we are getting a good handle on this pneumonia. The xrays had gotten better each day and his oxygen levels have decreased. The bleeding from his trachea is getting better too so I can believe the Tracheitis is getting better also. Things are on the right track! Danny still has a way too go, but at least he is on the up n up. Soooooooo I was able to sweet talk them into letting us go home on Friday morning ~ Woooohoooo! Aleana came down to pick us up as Danny and I were stranded in CHOW, with coming down via ambulance we don't have the luxury to jump in the van n leave whenever we want to. Boy was I glad to see Aleana walk into our room to save us from our fish bowl. Danny is still on TPN but we are slowly working to get him back to his normal feeds.... Slow n steady always wins the race as Dr Kasper always puts it :) So we will be partying here at home now, hopefully for a long time. Now that we are home I have some spring shopping to do for plants and some outdoor furniture, looks like Avrianna and I have some retail therapy to do :)

Surprise

So after my dreary post last week my son rings true to my expectations and proves me wrong once again. But with this I am delightfully happy for... as this last week has been WONDERFUL! I will take being wrong like that ANYTIME :)

Sitting up BIG n TALL very Happy....

Gotta Love that smile...... RIGHT?

Danny has been doing amazingly great this last week. Just a few bouts of discomfort but that's still to be expected as he still is only 2 months out from a MAJOR surgery (done twice). He's starting to tolerate his feeding better also :) I've decided to increase his pain meds on the bad days and wait it out alil longer for more information. I'm going to schedule a CT scan of his hip to see if there is anything we are missing. At least there is no added pain in that and it will give us a better picture of what's going on.

Here's me and my FAVORITE Lil Man chilln on the couch together last night. Dan took Avrianna up North again this weekend for some 4 wheeling daddy daughter bonding time. Which then Danny and I get some relaxing peaceful mommy and me time. We spent the evening cuddling and watching movies together. I LOVE IT!Avrianna went in on Monday after school to have her pallet expander with fence put on. I have to put a tool in the expander every night for 26 nights to crank it out "expanding: her upper jaw. She's a trooper with this, even though the last time I expanded it she's really is starting to feel the pressure from her mouth changing shape. It's really hitting her now how "not cool" this is as she's finding if VERY difficult to eat even the easiest of foods. As there is a Large gap between the top of the expander and the roof of her mouth so everything gets stuck up there. The fence isn't helping either with her to be able to swallow so even taking a drink can be very frustrating for her. I am very PROUD of how brave and how excepting she's been with this. It's a learn curve for her but will every day she is getting better n better with it.Here's the fence .... this is there to hold back her tongue from pushing up against the back of her teeth. She had a significant tongue thrust so we hope this helps out. Unfortunately it is set more in the middle of her mouth so she has to darn near curl her tongue to keep it behind the fence or the fence scraps her tongue. This for her the worst part for her as her tongue hurts her alot :( Yes it is as bad as it looks. So after her appt we took her for a surprise visit ~

I would like to introduce our newest member of The Osero household.......Meet

GUNNER

Gunner is a 6 month old Cocker Spaniel / German Shepard Mix. He was surrendered to the Humane Society as his previous family couldn't afford him. He is a wonderful boy. After Dan and I went to see him we took Avrianna there to see what she thought, of course LOVE at first sight for her. The next day I took Ms Bailey and Danny to meet him as if they didn't mix well it wouldn't be a good fit for our family. Bailey did great with him but she needed to put Mr Gunner in his spot in the ranks right away, LOL. Much to my surprise they were looking for her to get him to stand down so she stayed the dominant one in the house :) My favorite had to be when they brought Gunner in to meet Danny....as I wasn't sure what he would do with the chair and equipment Danny has. The first thing Gunner did was put his front paws up on Danny's arm rests, sniff him, and give him a BIG WET kiss. I was in LOVE with Gunner at that point :) I think Mr Gunner is already a wonderful companion for Danny.

Gunner had Cherry Eye on this left eye that was repaired on Wednesday. So after the vets look at him on Monday to make sure he is healing fine we can pick him up. We are so excited! Even though we know the next few weeks are going to be a learning curve for everyone I believe Gunner will fit into our dysfunctional family VERY WELL. Yesterday I went out and bought new toys, chew toys, bedding, collars, leashes, and treats so once he's home he will have his very own things.

So this is what happens IN my house each time it rains OUTside my house

The dripping and puddles are increasingly getting bigger n bigger with each new rain. I'm still very disappointed with all this but whatcha going to do, but ride it out. Unfortunately the follow through with this leak SUCKS as no one has come out to look, evaluate, and fix the problem yet. I still can't find it within myself to look up in the attic to see how bad it really is and I can only imagine what behind the walls look like. It's just very disappointing that we are dealing with yet another issue with this house.

I will leave you with this song I just heard. I can't wait to watch the movie now. A song from "The Secretariat"

IT'S WHO YOU ARE ~ (go to the bottom of the blog page and pause the music first so you can hear it)

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He's Back!

I have been seeing the smug look and even a smile here n there starting yesterday n today. I am so happy to see my lil man start to show himself again. I decided to put him in his stander this morning and he tolerated it for 1.5 hours. Way to Go Danny! Then he took a 4 hour nap this afternoon for, ugh. I'll take what I can get!

Danny's secretions have started to slow down too, phew! I can't believe how much goo can come out of one lil boy, non stop! I hope that this trend continues and this means he is FINALLY on the mend.

Avrianna is doing awesome in school and in the swim team! We started her in keyboard lessons and she is taking to the keys like a professional. AMAZING ~ Keep up the good work!

Please keep my dear FB friend, Katie, in your thoughts n prayers tonight as she took her best friend and sister home to be comfortable and around her children while she passes. It's been a very long road for this family ...... Thinking of you Katie n Girly! Hugs n Kisses

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Happy Birthday!

So as a birthday/anniversary present to US....I surprised Dan with bobble heads of us :) I thought it was a neat idea...seeing the kids had a head bust done, that we should have something too. They are cool!! These were also done by the same local artist that did the head busts...Tim Brunn. Thanks Tim!!
My birthday was Friday and Dan's birthday is today. So September is a busy month for us :) Dan took off Friday afternoon to go up to Tomahawkto see the Harley festivities, hang out with his buddies, and cut some fire wood. I can't believe it's been cold enough in the morning that I can have a fire, so I'm really excited once we get the wood here to have my first fire in the fireplace. I LOVE wood burning fires, snap crackle pop and the smell in the house. SNIFF!! So we'll celebrate our days tonight. Well have a roast in the smoker and I think the kids n I will bake a cake. Well see how ambitious I feel later, heehee.
I decided to take the kids out shopping for awhile yesterday. I was alil intimidated taking Lil man out in public, but it went well. Check that off the list of firsts....New trache out shopping, CHECK! Boy did we find the deals :) I LOVE shopping when that happens. We were out for about 4 hours and then Danny had ENOUGH and wanted to be home out of his chair, NOW. Avrianna must have been wiped from all the shopping and playing yesterday as she is STILL sleeping, heehee.
I was considering getting a cleaning service to clean the new house but decided to go out and get some supplies and do it myself (well with my mother's help). The house still has dust on the walls, trim and vents, the floors are bad, and there are sticker marks on the windows. I think the builder got ripped as they got a cleaning service to tiddy up before the parade, hummmm so not up to MY standards. So it just needs a good DEEP clean and then it shouldn't be too bad to keep maintained, you all know me OCD is kicking in.
Avrianna is making new friends and LOVING it. She now has a friend in her class that lives just around the corner from us. This is great! The girls have played a few times and I think it will be a wonderful relationship that will last forever. They are two peas in a pod :) Avrianna everyday asks if she can call and have her friend over. I told her you don't want her to get sick of you, heehee. I'm so glad she is adjusting well to school and enjoying it. Avrianna started Brownie's so she's excited about that too. I am trying to get her in the Neenah Swim Team as she LOVES to swim and she is so good at it. I think it would be good to challenge her with her abilities (much like school) and get her out competing. I haven't heard from them as of yet, but hoping I will soon. I got a letter in the mail the other day and they are keeping Avrianna in second grade. I'm excited about that!
Danny is doing AWESOME! As of Friday he has been off the TPN and he is tolerating his formula great. So tomorrow, after Michael (his home nurse) draws the labs, we are going to pull the PICC line. I can't tell you how happy I am about that! I was more scared of the PICC line then the trache. So NO MORE PICC line!!!! The next step will be getting Danny to tolerate a faster rate so he can be off the pump more. We are in no real rush so it will be a work in progress, Danny's the boss :) Then we will have to talk with a dietitian to see what will be Danny's formula that he will be ending up on, whether we go back to Promote or if there is something else out there that has less calories but the nutrients that he needs. He is still gaining weight, but I think it was because for awhile there, at the end, he was actually being feed double with the formula and TPN. He is at 64 lbs now, WOW!
Stop by our lil friend Moriah's site as she has some MAJOR set backs this week and he is in critical condition. Send many prayers and thoughts their way. What an amazing family! I'm so glad to be included on their journey. BLUE RIBBONS everyone!!
Thanks for stopping by and checking up on us. Please let us know you were here, as we LOVE to hear from you too.

Right track

Things around here are starting to get on the right track. I have most of the house decorated and organized, now I can sleep better, LOL. I still have to totally empty out the other house but most of the things there will be going to GW.
Danny is doing great! I have gotten alot of smiles today and the last two days he has been mostly out of bed, woohoo, with tolerating well.....BONUS! Thought I would share some pics Chilln out in the kitchen

Gotta LOVE that face!!!! He and I were having a conversation here. It just makes me smile to hear his voice. I was so afraid of never hearing him again, but once again Danny shows us all he is in charge. What independence!! I LOVE YOU BUDDY

And I'm working him hard here at home......yeap in his stander once again! He stood in it for 50 minutes and no fuss. Way to go!

Today Danny got a visit from Ms Maria (speech from last year)....it was so nice to see her. Thanks for stopping by! We were sad as she told us she will not be Danny's speech therapist this year. Danny did really well with Ms Maria so I'm really bummed that once again speech has changed. So far Danny has had a new speech therapist every year. At least they are going for consistency, right? We are going to miss you Ms Maria!!!! :( Tomorrow some of Danny's therapist are coming to see the house and see lil man so we can start a schedule for this year. I think we are going to have alot of new faces this year.

Avrianna is LOVING school and riding the bus. She has been waking up every day early (all by herself) and can't wait till the bus picks her up. Today she did the bus thing all by herself. She is very proud of her new found independence :) She comes home every day does her homework, tells us about her day, and asks "how much longer before tomorrow?". I'm very excited for her!

My baby is in there!!!!!! :)After her homework she goes for a dip in the pool

Today I went in for a follow-up appt with my Neurologist about my new symptoms. He did a few tests but he felt that until the symptoms disrupt my daily functions (aka falling, or blind spots, or so weak I can't get out of bed) that I should wait these flare up out and see how it does. My vision is off but I don't have any blind spots, I can't walk fast or I'll trip over my own feet, and my ability to do certain things has decreased. BUT I'm still moving on and pulling forward. Some days are harder then others but right now it's ok. I'm amazed at how fast everything has come on.....3 months ago I thought I pinched a nerve in my back to all of this. I did go and FINALLY get a hair cut! Here's the new do

Doing OK

Yesterday we had ALOT of smiles, chit chat, and longer periods of NO pain meds. Woohoo! The ONLY thing that is different this time around (for the stent) is that we have stopped feeding Danny's tummy. So my Mommy gut is wondering if the pain he has been in the last 2 weeks really wasn't from the stent but from feeding him? Now that nothing is in his tummy he is in a better mood, less pain meds, and his diarrhea is slowing down once again. HMMMM??Here she is Danny's primary day nurse....Lisa. Danny loves her! She has been so good to my lil man and to me (lol), I truly don't think I would have been able to make it this long here without her...her nursing, her caring, her attitude, and her friendship. THANKS LISA ~ WE LOVE YOU!Seeing Danny was in such a good mood and seeing Dan brought done the hair clippers.......SPA DAY! Danny got a hair cut, nails trimmed, bath, bedding change and trache cares all before noon, phew thanks again Lisa for all your help. I am going to go for a full Mommy SPA day once we bust out of here.....I PROMISE :) LOLHere's "The D Man" after the hair cut....yes Nanny the curls are GONE!Mommy hanging out with lil man in his bed watching "Cars". We like that movie!!! Where's the popcorn?

Danny is still up to his tricks don't get me wrong....spiking temps & funny rashes showing up here in there plus his blood pressures have been high since last night. Lil man is the Energizer Bunny as he was up ALL day yesterday (yeah even with the Spa treatment), hung out with night nurse Erin All night, and is still going today. It's almost 11:30 and still no signs of sleep. I hope he falls asleep soon as I know his lil body needs some rest. I sweet talked the the day crew today into ordering out for lunch. Well not much sweet talking was needed....I mentioned and everyone agreed, LOL. But we couldn't decided on just one place so Best of Both worlds I have Chinese and Custard coming heehee. What a mix but I'm excited!! It should be a low key day, but with Danny one NEVER knows. We have good nursing today too (Paul got stuck with us) so I'm confident that we can handle whatever comes our way, Bring it on lil man, Bring it on!!

Going Home!

We are GOING HOME!!!! YIPEEE ~ HORRAY ~ WOOHOO. Still has pnuemonia but he can do his cares at home. Xrays look better and no o's over night. Not sure exactly when we are breaking out of here. Need to do paperwork, see when the air mattress will be delivered, and see how to start up home nursing. BIG steps for us, but will be work out in the end, I hope. Wish us LUCK! I will post again when I get home or if anything changes

Settled In

Well I should be more settled in then I am, but Oh well. I am going shopping instead of cleaning and putting stuff away. I just wanted to post and let you know that Danny is doing much better. Yesterday he was awake and alert all day but no peeing......then today he has started to pee on his own, not great yet, but better. Today is very COLD and rainy so Dan's first day of racing was cancelled, ugh! So that means he got roped to go shopping with us, heehee. I will post more later. Hope you all are having a good day!
Our walk is on May 30th so ~ Please pledge your donations HERE and sponsor us in our walk for the Fox Valley Sibling Support Network fundraising walk. To read more on the FVSSN.Thanks for stopping by...please comment after the post or sign our guestbook to let us know you stopped in. We love reading your posts too :)

Broken Hearted

Miss YOU!!!! After my sister's family left this afternoon I found her in the corner of her room.....poor thing. She is just devastated. Everything is coming to a head this afternoon. Now that she can sit back and relax it all poured out. "First I lost my dad and now my cousins." I had to reassure her she didn't "lose" anyone, they are just going home. And that the time will fly by before she knows it her dad will be back then we will be heading back too. She is crushed!! This week I believe one of her seasonal friends will be here visiting her grandparents so Avrianna should be smiling again soon.

I got the beds stripped, the laundry done, washed the rugs, washed the floors, and both bathrooms are scrubbed. Whoooo, now I'm exhausted. The kids and I watched the movie Camp Rock and ate ice cream with extra Carmel on top this evening. We all were tired so our heads won't have a problem hitting the pillow tonight.

We are going to lay low this weekend, but on Monday the routine starts back up. Danny has Speech on Monday, Wednesday the AT therapist will be here, and Friday is the teacher with I believe PT. Avrianna has to get cracking on the school books (she had a 2 week vacation) so I know there is going to be some resistance till we get back to normal. Then on Thursday she has gymnastics. Yeap we are always busy doing something.....but I like it like that!

Today was a nice day here.....almost back to normal temps...it was in the high 70's. The last week it was cooler for temps around here, about low 60's and even has gotten to the low 40's at night. I LOVE it! I've slept with the bedroom window open since I've been here, but you can so tell who the true Floridians are....they are out with winter coats on (do they really sell them here) or multiple layers. Then you have me walking around in shorts and t-shirts.....they don't know what cold is.

Danny did AWESOME today! You wouldn't have even known he was SO sick the last week, if you saw him today. I am so happy, but scared it's the calm before the storm.....yea you know what I mean, Danny likes to throw curve balls and surprise attacks! The thought is he possibly had RSV, again, really....if so then he will have gotten it EVERY year of his life. The first two years it almost took his life, but the last 3 have just set him back alil. I think he does better with it every year.....or maybe I just do, whatever the case may be at least this year we can chalk it up.....DONE! I thought I came here to get away from that crap!!