Piled High......

With Emotions!


With each and every pair of shorts/pants/capris that did not fit, I felt more and more desperation. I just cried.....I'm overwhelmed! And yesterday was NOT the day to to go out and buy new clothes.... in a larger size. I can't believe pants that fit a month ago are now on that pile that was higher then my knee caps. Some still with tags on them, I bet they would have been cute on....sigh. A part of me just says who gives a shit, it's just a number .... But still pieces of my heart broke with each in every pair that I had to fold up and store away. I worked so hard to get to where I was as I have lost over 100lbs that last few years and was feeling great and looking wonderful. I am no where close to being up there again, but with every increase in size, it just hurts and Now no matter what I try ... between the MS meds and my f'd up thyroid - well Here I go again - WTF! I really DON'T want to have to deal with any more, seriously I'm going to snap one of these days. I just want to SCREAM, but what good would it do. It's sad when even my daughter has noticed :( and mentioned it a few times "how fat you're getting"...NICE. Avrianna has also been giving me the guilt trip alot lately that she doesn't have a sibling to "play" with. UGH!!! Really ~ I would just like to crawl in a hole. What a let down and disappointment I'm finding it more and more difficult to like myself lately. It's just one thing after the other. STOP IT ALREADY!
Today we are packing up to head down to Milwaukee for some follow up appts for Danny and then I have my monthly MS treatment. I'm not sure how today is going to go for Danny as once again the allergy season is kicking his butt (and mine now too). I had made many phone calls to doctors yesterday to get some helping Lil Man out. The doctors in CHOW have already been notified so we'll see what they say on how he is doing once we get there. Keep your fingers crossed!
I will post later with updates :)

New Travels

Our family was able to see so much more of the US, then I ever could have thought we would have, having this RV. It allowed the whole family to travel together along with ALL the equipment that Danny requires. There are so many memories that were made in this RV. I am for ever grateful to have had this so Danny could be apart of our family travels, and go comfortably. With that being said ..... Danny has outgrown the bathroom/shower so....................We welcome our new RIDE ~ to more n more adventures. It's 3 ft longer then our old RV so we'll have more space for Danny's equipment. But it's a BUS so it will take awhile for me to get used to driving it. I should catch on pretty quickly.... I can adapt ~ LOL
It's the same floor plan as our old RV which is GREAT...we LOVED the other one. If it wasn't for not being able to bath the boy we'd still have it.except this one has bunk beds for the kids to sleep in.....who do you think is getting the top? Avrianna is so excited to go on vacation.Now we just have to get it here and I can start the transition of making it OUR home on wheels. Thankfully I have some time to get everything in order before we roll out in it for the 4th of July. That will be a nice dry run of 3 days in it before we leave for our week long trip to St. Louis M.O. Once the RV gets here then we have to make sure the car dolly we have with Danny's Van on it will ride nicely behind this bus. I hope so or we'll have to have use some creative thinking.

Last month a spent a very long, cold, rainy weekend and went searching for a car, to tool around in. When I don't have Danny with me I want to leave the Van so if Danny needed to go anywhere the nurses have the availability to take him out. So I wanted to find a nice but sporty looking vehicle for myself. I can't remember the last time a I had a car to drive. Well after three days of test driving cars and then playing the seesaw game on price. ..... Momma got herself a new ride :)

Avrianna is just ITCHING for school to be done. I can't say I blame her with the "spotty" days of warm weather we've been having. BUT with every really nice day we've had here it has ended in tornado's. UNACCEPTABLE ~ Mother Nature!! I really wonder who pissed her off this year. Things NEED to calm down not just here but all over. My thoughts n prayers are with the families that have been effected by the destruction, injuries, and even deaths with the tornado's the last few weeks. It's just devastating !

Danny is continuing to hold his own but now, once again, has some significant ear drainage. It's nothing really new with him as he gets ear infections ALL the time....even WITH tubes in. Sigh! Danny still requires oxygen at night but during the day he has been stable. We still haven't heard back from CHOW about the Cpap over nite......but that is NOT surprising. Gotta LOVE those pediatric specialists....NOT ~ Their communication skills SUCK!

I am doing VERY well. I do believe the new MS med I am on is doing the trick (knocking on wood). I go back down to Milwaukee for another treatment on Wednesday in coordination with some of Danny's appts to CHOW. It will be nice to have Aleana and Danny along with me :) I went to the dermatologist yesterday for my annual check over and of course he found something "suspicious" on my side. so it was biopsied and I will have the results in 7-10 days. Now I have a dime size hole on my side, sigh. Then I had gotten a wart frozen off my foot. I've been dealing with this thing for years with the same old...."It'll go away on it's own" speech. Well it never did after 10 years so I've had to frozen now 3 times and cauterized off once in the last 1.5 years.....it keeps coming back, grrrrr. I guess I will just have to continue to deal with it as, now with me being on Immune suppressant meds for my MS and warts being a virus, it's going to be VERY difficult to get rid of. I don't know what was so different yesterday BUT this last freeze fest was AWFUL and very PAINFUL so now I'm hobbling around because my foot is so swollen and painful I can't put pressure on it. It's always something I tell ya.

I hope everyone has as wonderful Memorial Day....be safe. Please remember our fallen and current veterans who put their lives on the line to give us the freedom we have today. GOD BLESS AMERICA!!

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 :)

Teeter TotterIng

The first attempt at going off the vent was not a pleasant one. For the first 5 minutes it went great and then....... Not so good. Thankfully (if you want to say that) it wasn't really because he couldn't handle it respiratory wise. Let me explain, the RT took the vent off and started pep with his breathing treatment and Danny really liked that :). Then a few minutes later she started Mr.Jiggles once that was over with cough assist was started and then came the seizure -YIKES! About 30 minutes later after two rescue meds and back on the vent Danny calmed down. We all needed a break after that! I'm sure with him being down n out, just off then vent, and getting the once over with "pulmnology toileting" that he was just sent over the edge and was overwhelmed. I was bummed but like I said Danny's the boss and he obviously wanted to be left alone so that is what we did.....until later in the afternoon :) RT was wonderful and stuck in the room with me n Danny until things calmed down. The second attempt at coming off the vent was less traumatic on Danny, in turn on us all :). Danny was switched over from vent to his trache collar while he was sleeping and he did wonderful. Success!!!! Then a lil later RT came back and did the rest of his treatments so he didn't get them all at once like the first time. Since coming off the vent Danny did NOT need to go back on, but the machine was left in the room over nite just incase he needed some help while sleeping, but he didn't need to be put back on it so they removed the machine this afternoon :). Then there was a thought that possibly Danny had gotten sepsis so I was a lil uneasy until the blood n urine cultures came back clean, phew! The preliminary results from the sputum culture grew gram negative bacteria so now we wait to see WHAT the bacteria is in the final results. The hope is that the broad spectrum antibiotic he is already on will be effective in killing the bacteria so we dont have to put him on another antibiotic Yesterday afternoon Danny started to bleed out of his g-tube when it was vented so he is now on a med to help coat the stomach lining, which seemed to have helped slow the bleeding down. So they tried to feed him at a slow rate over nite as he hasn't been fed now since Friday afternoon. The feeds seemed to go well.....and then the retching began :( when we went to vent him he was still bleeding out of the g tube. The vented goo was tested for PH levels and that came back at 6 which shows that his prevacid is working and his tummy contents are not acidic so gastritis/ulcer is a harder sell now. Feeds are on hold until bleeding gets better and if it doesn't improve by tomorrow they will start TPN and I'm going to ask for a scope so we can see what going on in that Lil tummy of his. During his RT session this afternoon Danny started to bleed from his trache, geez... with all the work up they have been doing ie suctioning,tobi nebs, positive pressures, cough assist its no wonder why the trachea is irritated. But with the bleeding from both the trache and the tummy, with already low blood levels still from surgery, there was some concerns so they ran labs. The labs came back so so...his platelets are still very low (which doesn't help with the bleeding)..... well everything came back flagged low EXCEPT his CRP level which is an inflammatory marker. High is 1 and Danny's came back at 17, this is better then the 19 that he had in the ER on Saturday but still not good. Labs will be rerun with a few more tests tomorrow morning and we should have a better game plan with what's going on with that.
Dan and Avrianna came down to visit us yesterday, what a great Mother's Day gift....for me to hang out with both my children. I am so lucky and proud to be a Mom to these two AMAZING kids. I LOVE YOU Avrianna and Danny! Avrianna is doing wonderful with Danny and I gone. She does great when it's just her and Dan .... Even better then when I'm there. I'm glad I don't have to worry about that too when I'm down here. BUT Mr Gunner has been a naughty different story. I think he misses us and has some anxiety issues. Even if it's just us leaving for a few hours he gets into trouble. Of course I'm not sure what happened to him before he was at the pound BUT just being left at a pound has to set some separation anxiety issues. I need to get home and do some serious training guidance lessons for Mr Gunner.
As always I will keep you posted. Thanks for checking on us!

Hospitalized Mother's Day

Yesterday morning Danny's respiratory status went down hill fast. Friday morning I noticed Danny getting more junky and we chalked it up to possible teething and allergies, but it wasn't alarming. By 1:00 it was like someone turned on a switch for his secretions, it was awful I've never see him so junky before. Danny definitely gave Aleana a workout for Nurse's Day :(. As the nite went on his secretions turned from white, to yellow, then GREEN. Yuck! By morning I knew Danny needed more help then what could do for him at home....aka ventilator :(. He was breathing so fast and hard his poor face was fire engine red and his heart looked as if it was going to come right out of his chest :(. Once we got to the local ER I knew in my gut they weren't going to keep us there on breathing support so......we got a "boxed" limo ride with the special treatment. We rode in the very decorated and "fun" ambulance. It's amazing how many people will stare at the ambulance while driving. The ambulance team was wonderful with my Lil Man, unfortunately Danny didn't like the ride too much but he settled down once we got to CHOW. The diagnosis when we got here from Theda Clark was pneumonia,but the doctor here wasn't so sure (she's a pulmonologist too, lucky for us) so she wanted to see what this mornings X-rays looked like and see if any of the cultures that were done had grown anything. Last nite was VERY LONG....as the med port access had clotted (this was the first time it was accessed since placement and it wasn't in more then 10hrs and a clot already) so new access needed to be established. The with Danny not having a cuffed trach the air was leaking from the vent and it was alarming ALL NITE LONG (let me tell you a vent alarm is NOT subtle, it darn near throws me out of bed). Of course after we fall asleep X-ray is in the room at 4:20am YIKES! The X-ray this morning did infact show NO pneumonia :) so they believe tracheitis or some other infection of the trachea is brewing. We'll see what the cultures grow out but until then they going to hit him with antibiotics, breathing treatments, Mr Jiggles, cough assist around the clock. He isn't tolerating things in his gut so we are moving slowly with his meds and "trying" food, but this morning when we vent him we are getting blood so we'll see what comes of this. As I type this the RT is in here and we are going to try him OFF the vent to see how he does. HE IS THE BOSS so he will let us know- please cross your fingers and say a lil prayer that the vent will stay away. Well I need to run but wanted to let you know Shay going on with us. Happy Mother's Day!!!

Wonderful Accomplishments :)

Congratulations Whitney on your Confirmation :) We are so Proud of you. Reach for the stars girl...YOU can accomplish anything and everything! We LOVE YOU!Happy Nurses Day ~ To our WONDERFUL Nurses Aleana & Gail! They are our FAMILY :)

Happy Mother's Day ~ My 5 Generation picture! (Taken 5-1-11)

The Whole Crew! I'm very thankful for my family and that I've been able to share so many memories with them. I'm one Lucky Lady to have them in my life for so long :)Danny chatting it up with his Great Great Grandma NaGreen. She is SO FOND of Danny! (Sophia NaGreeen 98)
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Look what I can DO! My Mom NEVER gives up on me, Pushes me to my limits, and gives me opportunities that I was told I couldn't do :) SMILE!

Not only did I give him strawberries that day, but he licked a Dill Pickle potato chip (ewww), and had some applesauce (YUM). Can you say MAJOR taste overload? But he did GREAT with it. Vanilla Ice Cream is one of his favorites :)

Yesterday Danny was back UP in his stander. After a surgery, where in the beginning, I was told Danny would never be able to go back in. Well............................... Take THAT!

He is more reclined then he used to be, but he's UP and tolerating it :) Have I told you how PROUD OF YOU I AM, DANNY!

Danny's post op appts on Tuesday went very well. We don't have to see Ortho now until he is ready for another rod lengthening. They think it will be right around the beginning of Sept. BUT we'll see what his xrays look like. I will bring him in for xrays the end of the summer. If his curve is stable then I will put off the surgery until HE is ready for it. There is NO sense in growing him out if HE isn't ready for it. Danny is growing up so fast on his own, he doesn't need someone else to do it for him :) The ENT had to pull out another blood clot out of his right ear again, but now that it's out his ear should be good. Just another week of ear drops and to watch the ear tubes and make sure he doesn't have an allergy to these ones.

Avrianna is gearing up for the Summer. She can't wait! We have a few things planned this year: a Drama class, going up North for the 4th, having her cousin stay with us for almost a month, going to St Louis to Jellystone Park and doing some fun activities there, and she has a week long Girl Scout camp. She is going to busy....does that surprise you? NOT ~ LOL! Avrianna is doing really well with her glasses that she got about a month ago. I guess she really needed them ...darn kid should have told me sooner she was having problems. I'm glad we got it taken care of now and she is going great. Her braces haven't been bothering her, only when she gets them tightened does she have some discomfort for a few days. I can't believe how much/ fast she is growing up :( This week I did a bunch of cleaning out and the Barbie's went away, the dolls, the small bike too all went away....makes me sad. My Lil girl is becoming a young lady!

I was able to have my first MS treatment in Milwaukee the same day as Danny's Post op appts on Tuesday. I was so nice to have Gail and Danny there with me. Danny of course was the center of attention :) Everything went great! It's refreshing to say I'm doing good and in minimal daily pain. I didn't think I would EVER feel like this again.....EVER! So I'm grateful for the extra time I have :)

Dan is deligently attempting to get his race car ready. Good thing the weather has been darn right CRAPPY this last month and most of the racing days have been canceled. When he's done with it is should be a whole in car under the hood and electronically (not one of Dan's favorite things to do). I'm sure once the weather gets more like spring/summer around here he will be more busy with Fire Calls too but for now he has been busy with his Fire School and Training.

Mr Gunner got himself a "new" home. Yes the kennel is back! I think he has anxiety when we leave and lately he has been eating shoes when we are gone. Grrrrr! So instead of replacing tons of shoes and a possible vet bill, I went out and got a kennel so he will behave and be safe when we are gone. He is SO NOT impressed with it, but as Dan put it Game OVER and you lost. LOL!

I can into contact with an amazing BLOG the other day. This mother is AMAZING and inspirational. She knows exactly how to say how we all feel. I just LOVE reading her blog. I HIGHLY recommend taking a look at her Blog The Bird on the Street. If anything please read this post she wrote ALL I ASK it is a MUST read for my blog friends and family with and without children with Special Needs. Please Read it! I was going to repost it her on my blog for you all to read but I can not. And this post The Problem with Raising a Special Needs Child. Heck I could many more on here just stop in on her blog you won't be disappointed!

Thanks for checking in on us! Please let us know you stopped by as we love to here from you too.

Well HOP to it!

Happy Easter from The Osero's

All of the baskets n eggs were found in about 30 mintues....guess the Bunny needs to do a better job of hiding them next year :)

My AWESOME kids!Avrianna snapping pictures of us ~What a wonderful holiday! We had Papa n Claudia down to celebrate Easter with us. We went over to my Aunt's house for lunch, this was the first holiday in a few years that we actually went to someone else's house. As always the house was a buzz with stories and jokes, great times....great times!
I know I've been slacking on the recovery updates. No news is good news though. We've been without a nurse,those part timers think they should have a holiday off once in awhile ~ LOL, so I can use that excuse as I've been spending some awesome one on one time with my Lil Man. I've missed being his only one, BUT boy is he high maintenance, LOL. I'm exhausted ~ I can't lay all the blame for that one on Danny .... I also forgot how much fun it is with having NO time restraints so we've been out n about shopping :) With the weather being so great

and Danny doing WONDERFUL, we just kept going. Retail therapy ~ AHHHHHHHhhh!

Danny giving the PICU nurses some grief....miss you guys!

We were out of the hospital less then 48 hours after surgery and not to mention tolerating his feeds already....Oh My that is a record, I think :) It is so nice to see Danny so comfortable, it just goes to show you how much pain/discomfort he was in on a daily basis. We did have alil scare

the first morning we were home with bleeding from his port site, but Dr Kasper came over to the house and checked it all out. For whatever reason Danny started to bleed alil Thursday evening when we got home by the time the morning came around it looked as if it was still bleeding. The fear was the port had a possible malfunction, but thankfully it was only a VERY large clot. Once that was removed and we had a pressure dressing on it for the day, the site stopped bleeding. Dr K was able to draw labs on Danny, when he was here, to see if he was going to require a blood transfusion. I had requested Danny's labs that were taken in the hospital be faxed over so we had a comparison to go by. Seeing the labs there was a concern as his levels were continuing to drop since surgery, I was surprised they let Danny go home with the #'s so low. Danny must have lost alot of blood during surgery.....and afterwards. Once the labs that, Dr K drew, came back we all could take a breath, because, things were stable, they weren't dropping anymore which was a relief to hear. Danny will be on extra iron to supplement for the next 2 months while his body is now working double time to make new blood cells. Other then the bleeding scare Danny has been a ROCK STAR! He hasn't had any pain meds, not even Ibuprofen or Tylenol since he left the hospital. AMAZING how his leg can be cut down the side, all the bruising, with his bone cut off and he is in NO PAIN. I can pick him up and no issues. He can sit in his chair for hours and NO issues. I can change his diaper and NO ISSUES. I can't believe it!

See for yourself it looks like it hurts ~ (taken Easter morning 5 days post op)

Yellow bruising on top and into the groin area

Still swelling n purple bruising on the bottom .....The abductor wedge he has to wear.....NOT impressed with this one too much......see where the horizontal tape is in the middle, around the top to middle of that piece of tape is how far down they removed the bone. Not only did the surgeon cut the head off he cuts down about 1/3 of the femur bone to make sure there will be no rubbing into the hip socket anymore

Here is Danny's Med port siteit looks like a life saver in his chest :)I'm a ROCK STAR! My mom says so......And his poor eyes still look as if he'd been in a fight.... this is what happens with wrong tape, grrrGunner was very excited because as if this morning the cone of shame had been removed and put away. All four of his paws are healed and he isn't licking them anymore. Another long haul with the dew claw removal, but definitely not as drawn out as Bailey was last spring. Bailey's ear is healing nicely too. That was a relief as I was not looking forward to having to go back to the vet to have a drain sewn in. I have met my vet quota for the month, LOL. So I'm hoping they take it easy on me next month.

Thanks for following us through yet again another journey. Your support means the world to us. Take care! and let us know you stopped by :)

Do I know my Lil Man?

Danny is great with all his procedures yesterday :). Surprisingly he came up to the room awake, I hadn't planned on seeing those baby blues till some time today. He came up to the room about 6:30pm, on a vent, with out his PCA (pain Pump). So things were a lil crazy trying to get him settled and comfy. Thankfully he has nurses that are already "seasoned" by Danny -LOL. They were/are wonderful with him. Once again it helps ease the admission when you have friendly/familiar faces that know most of Danny's Lil curve balls. Unfortunately we weren't as lucky with the RT and NP at admission/during the nite - so the nite wasn't as smooth sailing as I had hoped but all is WONDERFUL this morning. Once I saw Danny's #1 RT walk in the door I knew things were going to go better for Danny's recovery path. Jackie is AWESOME!! We LOVE her as she knows what needs to get done, she follows through, she is patient, and kind and on and on. With Danny she is His ROCK - RT is so important in Danny's world :).
The med port was placed in Danny's chest for the second procedure. The surgeon said that it was a lil trying to thread the catheter under Danny's clavicle but he was successful in getting it in the optimum spot. Go figure Danny presenting a challenge to the "new" doc. As this is the first time Danny had to be seen by a general surgeon. I know I can't believe it myself, but all the other surgeries or procedures have been done by a specialist. They haven't accessed the med port yet as they left the PICC line still in....it's an access he already had so why pull it until we know for sure the port is going to be a good thing for Danny (ie infection or allergy reaction).... just in case we have access as they tried to get an IV in during surgery and they were not able to.
Then the ENT took a look at his ears once again. They still did not look the best especially the right side. There is still granulmona and scar tissue in the right ear. So Danny got his ears deep cleaned and new hypo allergic tubes in both ears. Once the tube was put in the right side a lot of blood started draining out of it, YUCK!
The day nurse and. Ite nurse was herd in the room when he came up from OR so Danny was tag teamed. It was a good thing as he was a Lil high maintenance once on the floor. From bleeding out of the trache, out of the ears, the wound dressing was filling up with blood, getting the PCA on the floor to get him more comfortable they had their hands full. Danny just loves getting all the attention.
The ear drainage has slowed down a lot and he is no longer bleeding out of his trache :). His incision site is still touchy and along with his blood work being a lil off this morning he might need some blood product to boost him up.
The best news is, he is OFF the VENT. Last nite was awful with Danny being on the vent as he fought it all nite causing more grief then good for him. Danny breathes so slow and shallow when sleeping the machines don't recognize it so it will steal Danny's breath away when he really is breathing...then causing the machines to alarm and on and on. We went through weeks n months of this when they wanted Danny to be on the C/Bi-pap. Once Jackie came in and saw he was on a vent she did her thing got him off the vent, in a matter of minutes and he is resting and breathing comfortably :). It's looking better for sleep tonite-wooohooo. I've been up since 2am so it's a Jammie/nap day today...visitors beware -LOL.
I feel a headache coming on.....can't imagine why? So looks like my nap time is near!

Hip surgery is done!

Danny is doing GREAT! Dr Tassone came up to the room around 5pm (Danny will be in 410) to let me know his part is finished. Everything went well. They took the screws and plate out from the first hip surgery in Dec 08 and then removed the head and part of the femur bone. Once that was removed he flapped up the muscle in the empty space to use as a cushion. Once the doctor was able to see inside he said that the dislocation actually started to wear down the bone which can be painful. Boy it hate it when I'm right - sigh. Now hopefully Danny will be in a lot less pain. Danny has about another hour to go in the OR and then they will bring him right back to the room from the OR. I can't wait to see him
I'll post later

Danny's in surgery

At 3:20pm Danny went into the OR. The procedures are to run about 3 hrs. First Dr Tassone will be doing the hip, once he is finished a general surgeon will be coming in to place the med port, then the ENT will be going in to look at Danny's ears and possibly put
In new tubes. I will keep you posted
I got a phone call from "A's" school about 11:30 today. She slipped and fell in the lunch room smacking her head on the floor. UGH! She was a trooper and held out in school till about 1:30 and then I got another call she was in the office with a bad headache so Dad to the rescue he went to pick her up and take her home. Sigh - I wish I was there for her but I'm glad Dan was home so he could be there.
Never a dull moment!

Sunny Days

The grass is turning green, the warm breeze is here, and the SUN is shining down :) Breathe......... ahhhhh, how refreshing. I just love this time of year when LIFE comes back.

Yesterday Dan and I took a drive down to Waukesha to see a new Neurologist at an MS clinic in the Memorial Hospital. AMAZING and breath taking! I feel like a can breathe and relax alil better now. They get it! Dr. Smith is very understanding and knowledgeable. Not that the one I was seeing here in the Valley wasn't good......BUT this one is GREAT! I feel more a peace now that I'm giving it my best shot and whatever happens happens but at least I did everything I could. I'm ok with it......I'm sure I will have shitty days and just want to throw the towel in but I have someone more in my corner that I KNOW will pick me up and be there every step of the way. How many can say that about a Physician? I've worked so hard at giving Danny and Avrianna the BEST physicians, it was time for ME to do the same and it feels as if a load has been lifted. I guess I just thought it's was ok for me to have a doctor, but to have a PHYSICIAN wow what a difference. Do you know what I mean? I am NOT doing this alone. I know I have Dan, my friends, and family but as I say with Danny, if you are not living it you really don't get it. I learned so much in the hour I was there with her then I have ever in the whole 2 yrs since I've been diagnosed with MS. It was refreshing to have Dr. Smith confirm alot of my suspicions about what been going on with me. It was great for her to tell me how beautiful a women I was, how feminine I looked, how she loved my attitude, and how I composed myself well that she wouldn't have known I had MS. I know it sounds weird but it was uplifting for me. Even though some of things weren't easy on the ears to hear about like the progression of this disease, how bad my symptoms are, and what is probably in my future. BUT I know I am giving it my all and I'm ok with whatever I am up against. The only "bad" thing is that I will be traveling down to the Milwaukee area (about 1.5hrs one way) more as I have to be there once a month now for myself and then we have all of Danny's specialists n procedures at the Children's Hospital. I am a pretty good coordinator, if I don't say myself, so I'm pretty sure I will be getting as many appts on one day as I can. It's always a busy day then but then it's done :) It was so nice to drive down with Dan yesterday, with the sun shining .... Thanks for going with me it was a great day hanging out with you :)

Danny is doing ok....he has been hit with the allergy monster (as ALWAYS during this time) so we are been very diligent on meds and treatments. His secretions have increase and become very thick. We don't need him to aspirate on it and get pneumonia as his next surgery is right around the corner on Tuesday to remove the head on his femur and, have a med port placed. I'm telling you never a dull moment here.

Avrianna continues to be a social butterfly so she's normally on the go. She can't wait for summer and asks me over n over again when we are going to get the pool up. Well it's expected to have snow (yes I said it, grrrr) on Saturday. REALLY ~Why do we torture ourselves with this weather here in Wisconsin? Two days ago it was in the 70's....seriously who pissed off Mother Nature. The weather here and far is so off the charts lately.

We are attempting to plan a summer vacation which is exciting but it depends on when Dan has his fire school training and IF we are all healthy. Wish me LUCK with that!

Thanks for stopping by to check on us. As always we LOVE having you follow our journey in this crazy world we call LIFE.

Danny's New Ride

So what do you think? Danny is going to be one stylin kiddo :)Roll the chair up, lock it in place, and he's off ~ So COOL!APRIL FOOLS! It would be cool though :) Aleana thinks this is in Danny's future, hahahha...I'd like to see her chase him down the road, now that would be priceless!

This is his new Ride..... 2011 Toyota Sienna that we got from Mobility Works in Waukesha,WI equipped with a Vision conversion.

It's a green/grey color ~ really would there be any other color I would choose, other then possibly lime green. LOL

The rear hatch opens, the vehicle kneels, and the ramp fold out all with a touch of one button.
The middle of the floor is cut out, and it's equipped with full size Captain chairs that fold up for the second row seating, and a two person fold up bench for the third row.

Here you can see the seats folded up ~ the sunroof ~ the rubber floor where it is cut out ~ and the TV for the kids. Plus a better view of how the seating is when it is folded up.Installing the EZ lock system in the right place for Danny....just roll him in and the bolt under his chair locks into the base and whala he's in. We have a lap belt for him too, it's not needed for this system but I feel much safer with it on :)Danny trying out the placement of the EZ lock system
View of the passenger second row folded upWe are enjoying the new van and all that is does.....We're so spoiled :)

No more BIG Green Bus for us......this was a wonderful change to our suite our family !

Here We GO again

The talk of the 4th floor......Lil Man and his blanket. It was a HIT!Danny getting and pep talk from Dad about behaving himself ~ right before Dad had to go back homeHe grew once again! Boy he's growing up WAY TO FAST The reaction I got after I told him ... he gets to go home :) Priceless!Danny's new War wounds.....my poor Lil ManWe hit a record ... shortest stay after surgery. Danny was discharged on Saturday afternoon a whole whopping 24 hrs after surgery. I can't believe it myself! Our hold up of all things was once again getting the TPN on order and delivered to our house. They had to call in the pharmacist to make it for Danny and it was too be delivered to the house around 3:30-4:30 but it didn't arrive till 8:30pm, ugh. I was so tired I decided to wait to hook him up in the morning. We were all so happy to be home and sleeping in our own beds. Until next time couch/bed.....you will be missed, NOT! After giving report to Aleana in the morning she did her assessment and much to my surprise she stated "He had bowel sounds". Music to my ears...weird, when did bowel sounds become the highlight of my day? Needless to say we gave formula a try.....Danny ROCKS ~ he tolerated his formula so NO TPN is needed this time around. WoooooWHooooo!

The injection in his hip is working to relieve his pain so the Dr's are confident that it is indeed his hip giving him all the grief. I totally understand the reasoning of the Dr's wanting to confirm the unknown for before such a big surgery, but I was totally confident of where/what the source of Danny's pain was and I just wanted to get it taken care of during the last stay and then he'd be done. Now with that being said.................next surgery is scheduled for April 19th at noon. Once again there will be a few things getting done while he is under anesthetic.

The orthopedic surgeon will be doing a Girdlestone procedure....which will be HUGE not only as a procedure but for Danny. The Dr will be removing the head off his femur so Danny will no longer have a dislocated hip, it will then be called a "hanging hip". I was really torn on what to do with Danny's hip and the discomfort he was having daily. But through lots of soul searching, research, and opinions of others I feel this is the best for Danny. After already dealing with hip surgery that failed and multiple attempts to relieve Danny's discomfort this new procedure will definitely take care of his hip pain forever. BUT with a cost...his bone will be cut off and he will never be able to weight bear. I have come to grips that Danny will never walk and he can't or doesn't have the ability to stand so I need to make him comfortable and give him the best quality of life I can.

The ENT will be popping in to recheck Danny's ears and make sure they are healing nicely and deep clean them again if they need to be.

Then a General Surgeon will be coming in to place a med port in Danny's chest. I can't believe I've gone through something before Danny did. With the limit sites available via PICC having a med port in should be an easier route to go. Now we don't have to bring Danny in before each procedure for a PICC line in hopes the find an access and no more multiple picks to get a blood draw.

So stay tuned and I will keep you posted with our hectic lifestyle. Thanks for stopping by to check on us!