Tuesday, May 31, 2011

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 :)

Friday, May 27, 2011

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!!

Monday, May 23, 2011

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

Sunday, May 15, 2011

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!

Saturday, May 14, 2011


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 :)

Monday, May 9, 2011

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!

Sunday, May 8, 2011

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!!!

Friday, May 6, 2011

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)
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.