CHANGE

These numbers are still an occurrence around here  ~  sigh

So the decision to cancel Danny's surgery that was to happen today has been made.  He just isn't holding his own yet.  I do believe he is getting better, BUT he's no where he needs to be to undergo a surgical procedure.  I would just be asking for trouble if we went ahead with it today.  The surgeons have been wonderful to work with and both of them agree that our primary goal is to get him better FIRST.  We have already worked out a new date for surgery, May 29th.  So I have a month to whip him into shape :)  I'm alil apprehensive with this date as we are due to leave for our week long vacation to DC on June 8th.  Cross your fingers that this surgery is in and out with no hitches so we can leave for our family vacation as planned.

Even though Danny wasn't feeling the greatest he still was able to participate in some activities.  Just look at those facial expressions.....I can help but laugh :)  Ms Bowers came out with some dirt and flowers for Danny to plant. This wasn't Danny's idea of a good project.  He hates his hands being dirty!!

Seriously.......this is disgusting!!

EEEEWWWWWWWWWWW ~

Sunday The Evan's family laid to rest their 8 yr old Lil Princess, Emily.  The family asked everyone to show their love n support by wearing PINK and/or Hello Kitty.  Even though we couldn't be THERE, we were in spirit, all of us!  You will be forever in our hearts Ms Emily.  Fly high!!

We found Hello Kitty slippers at the store on Sunday......so Yeap HAD to get them :)  Love you Emily!!

Yesterday I went to Wicked Ink in Neenah and got this AWESOME Tattoo.  I LOVE IT!!  Every time I look at it I smile :)  Thanks for the wonderful work Jake!!

The Red is for Dan and Avrianna's Blood disorder, Orange for my MS, and the Green is for Danny's birth brain injury CP

Everyone needs alil HOPE!!

This weekend we implemented a chore list for Ms Avrianna.  She was very excited to go shopping for the supplies, decorate, and participate in the ideas to make this happen.  We are ALL very optimistic with this as we have already seen wonderful results in the first few days.  I hope the trend continues!  I got many ideas off of Pinterest (yes I'm totally addicted) and after reading this ARTICLE in the paper this weekend, I felt we NEEDED to start.
To the left she has a bunch of chores to choose from, once completed it goes to the right.  She needs to have a minimum done by the end of the week to get an allowance (in addition to her daily "jobs" that she needs to do).  The Ransom box is for anything laying around, it goes in the box and she has to pay $ or perform a different task to get it back.

CONGRATS to Aleana and her family with the addition to Ms Haylin ~  She is a DOLL!!  We will miss her while she's on Maternity leave playing with her babes :)

Picture US cousin

Avrianna is very excited to have her cousin from Tomahawk here for the week. What a great week for Whitney to come. We, oddly enough, didn't have anything planned and with Danny still being out a sorts it's nice to have someone for her to play with. The nurses schedule had been "off" this week with vacations and Danny being gone for surgery so he's been stuck with just his mom more then normal. Which makes it hard to keep Avrianna occupied all the time.
Whitney going down the slideAvrianna going down

These two are two peas in a pod :) They get along very well and they like ALOT of the same things. I'm sure she's LOVING it to have someone your own age around. Both of the girls are water bugs......I finally had to drag them out of the pool at 9:30 last night and they were right back at it after lunch today. Avrianna is going to have a friend sleep over for the weekend while there parents are out. So I'm sure she is going to be worn out. I am going to surprise Avrianna and take her to the Dells next week so I hope she's not too wiped. I think we need to have some much needed one on one time just us. Once again our summer has been cut short with us hanging out together with dealing with Danny and his needs so I'd like to take her somewhere where we can have fun. She's never been to the Dell's and I haven't been there since I was a kid so we'll experience it together. I figure if it has water it should be a hit with her. I can't wait!! One of my girlfriends might be coming and bringing her kids so they can show us the ropes and that way Avrianna will have some other kids to hang with too. Dad and Danny will have some bonding time in the evenings as during the day his "girls" will be here to take care of him.

Boy is it a HOT one out there today, WOW! I'm very thankful for the pool and A/C. I don't know what we'd do without them. With the heat I'm pretty much inside with Lil Man ~ he doesn't do well in this heat, at all. Not to mention heat and MS are NOT two things that play well together. That's ok, I can update the blog and start my newest scrapbook, our Disney trips. Lil man has been a BIG help, I'm telling you he's a great supervisor :)

Danny and I were served our walking papers on Friday afternoon. I wasn't so sure we were going to bust out of there as on Thursday night he become VERY irritable and my gut just sank wondering and worrying if the hook had become unhooked again. I hate that feeling, that it will always be in the back of mind, what if. We still don't have a reason why or how in the heck it happened the first time...so now I've become one of "those mom's" ~ UGH! So I asked if we could order a KUB to see if there was something going on with his tummy (as it was getting very distended again), knowing that I would be able to see the hooks of the VEPTR and know if 1. they were in place 2. something was us with his tummy. My hidden agenda, LOL. I saw the KUB and then took a deep breath as the hooks are still were they should be. Not so funny story here.....the xrays I posted on Monday the ones that sent him back into the OR as the hook was out of place (very obvious for even me to figure out) well the radiologist report came back with hardware in proper position. Are you kidding me?!? Just makes me trust the medical field even more, grrrrr.

Ok now back to the KUB....all I could say was WOW ~ at first I thought F.O.S (full of sh*!) as his bowels are full and black, BUT I found out it's just ALL air. Which is proof that he gut is still not awake. Danny gut is VERY SLOW moving to wake up, this time around too. So he is totally on TPN still for nutrition, but thankfully he is tolerating his meds through his g-tube. We'll just have to be patient, HA, and let Danny do things on Danny's terms or all we go is backwards.

The upper viewLower view

You can also see his new hooks in place and the right hip sublexed (one with the hardware already on it)

Boy was it nice to sleep on our own bed and eat decent meals. I came home feeling very sick to my stomach and exhausted but it was a LONG evening for us. With us getting out so late in the day I didn't have nursing waiting for us when we got home. So even though it was great being home it's always alot of work getting things in place and ready for Danny. I passed out even before my head hit the pillow that night.

The recovery road....AGAIN! This time around has been more painful for him :( BUT we are starting to need less pain meds and his wheelchair time has been getting better. The incisions, must to my surprise, still look great. The steary strips on the top reopened incision are off and it has healed over already....AGAIN! I have noticed a large "Dimple" or divit if you will, right above an incision on one side, that wasn't there before. I am going to have to inquire about it at the post op appt next week. He is healing very well and with my measurements he's grown about another inch with the revised VEPTR surgery, that would make him 48"...... Seriously Danny?!? BOTH my kids have this mentality that this is THEIR world we are just living in it, LOL.

Here's what Dan has been up too....his new hobby. Picnic Tables ~ I LOVE it, so now he has to build one for us as this one is going up north to the Shack. Handmade all for the wood cut from The Newwoods.
I don't know if you remember from the Fourth of July when we were up North for the Fourth we had Dan's cousin from Vegas take some pictures of us..... We'll here are some of my fav's. Thanks Lori!

When it gets quiet and there is a 7yr old around..........

Now I have to get all the pics together and figure out which one we will blow up for our family portrait. I hope to get the rest very soon.

Thanks for checking in on us!

Here's Danny's newest images of his revised VEPTR ~ From this view I can notice a very different placement of the VEPTR rods. I can only hope that it's an improvement for the better and he won't be in this predicament again. Sorry I didn't update yesterday but it was an exhausting and emotional day here. It didn't start too well, BUT when starting at the bottom you can only go UP. Right?
Danny woke up yesterday with the persistent fever he went to bed with. His poor heart rate was just a racing! I don't think he really got a restful sleep when his heart was beating like he was running a marathon, instead of sleeping. The doc put him on some BIG dog antibiotics in hopes that if something is brewing we can nip it in the bud. They ordered a few more blood tests to run and unfortunately the brand new PICC line wouldn't draw. UGH ! Danny's urine output came to a stop and what did dwindle out was not so nice in color. In addition our attempt to to start feeds yesterday failed miserably. I just wanted to crawl back in bed!
A dear friend of ours is here on another floor ~ Alex is to gain his wings today. It has been a long hard road for this amazing boy. He always had a smile on his face, a webkinz at his side, and a huge heart. Today we will lose a brave wonderful boy but the heavens will gain an amazing angel. My thoughts n prayers are with his family today.....I can't even imagine how difficult today will be for them. Something I wish no parent should ever have to go through. I hope Alex can finally be at peace and his family can find peace in their hearts. Spread your wings and fly sweet boy! Please feel free to check out Alex's CB site I felt very honored that his family allowed me to go in to talk with him yesterday morning and say my good byes. You'll have a special place in my heart Alex....ALWAYS!
Yesterday afternoon I requested Danny's second enema and all I can say is "The Ileus has left the body", heehee. WOW ~ I don't think I've EVER experienced a Code Brown that large, EVER! Right after his blow out it is was like a switch was turned off and his fever dropped and his heart rate went back to normal. His nurse put TPA in his PICC line and within a matter of minutes, Wha La it drew once again. So yesterday ended alot better then is started!
Last night went well for Lil Man and today he continues to chill out. So "the plan" is to get discharged tomorrow morning some time. We'll be going home on TPN once again and unfortunately back to ground zero trending back to g tube feeds. We've attempted a slow rate of formula again today, but I'm not sold that it's working yet. Time will tell and at HOME we have ALOT of time :) My hope is that the next update will be when we are home...... as always I will keep you posted with what's going on.
Dan and Avrianna have been busy this week. Avrianna has been a wonderful help to her dad while we've been gone. Today they both went in for eye exams so I can't wait to hear if they need new glasses or not. Today is Miracle Treat Day at Dairy Queen....as if they need a reason to go get a blizzard, but I'm sure dad will get roped into getting her a special treat.

UGH ~

Tonight we're watching Charlie and the Chocolate Factory ... well I am as Danny is out like a light, phew....I think he's somewhat more comfortable with his pain level:) BUT as I'm looking at the monitors his heart rate is dancing in the high 160's and his fever is over 102 despite being naked, having Tylenol, and cold packs. Poor thing! I think something might be brewing, even though I continue to hope it's just his dysautonomia kicking in. I was told earlier his labs looked ok, but after you look at the big picture......his white count more then doubled from yesterday and his crp level (inflammation marker) is high, so maybe they aren't that ok ~ especially with what going on right now. Is this just Danny over exaggerating OR is his body trying to tell us something is wrong? Well he has the night docs on their toes and alil alarmed so here comes the Calvary once again to draw every culture they can and then they are going to start him on antibiotics. As the common statement here is ~ "well you know, this is Danny" as Danny has burned a few docs here before with what "normally" should happen and how Danny is on the other end of the spectrum darn near EVERY TIME. Sigh! I was really hoping, seeing the newest trick of giving him more Valium on top of his pain meds seemed to help his comfort level better this afternoon, that I could think of busting out of here tomorrow or Thursday. Now I'm not too sure.....we'll have to see what the rest of the evening brings to rm #414. After receiving his second enema for the day we finally had a "Code Brown" that even required changing all the sheets, YUCK! But hey that alone, you would think, should make him feel alil better. So today had and still has alot of ups n downs not too mention some uncertainty for my Lil Man. Once again from a surgical stand point his incisions are GREAT now we sit and wait to let Danny recover, Danny's way as we all know if you push him too hard it'll bite you and we'll be back to square one. I hope that we will be able to go home soon. We miss his "girls" at home, even though he is getting great care here their not his home RN 's.... We miss our own beds, even though the ones here are........we'll lets face it, they're not so great. We MISS Dad, Avrianna, and Bailey VERY MUCH!
On a fun note....I chatted with my mother this evening. She's on a bike riding mission this weekend with some friends, on a pedal bike. She rode 37 miles today ~ mind you she hasn't been on a bike since she was a kid. She only fell off it once skinning her leg, but her bum I think is going to need a a break. I don't think she's going to make the 37 miles schedule for tomorrow as she might need to nurse her body back to working order, LOL. I'm very impressed though as I know I wouldn't have been able to do 37 miles. Way to GO MOM!

Stauts

Just wanted to let you know that the nodule biopsy did NOT show any signs of cancer, phew! What an awesome Dr to call on the weekend to let me know...he said he wanted to call right away so I wouldn't worry all weekend about it. So NICE! I am to have a follow up on the nodule and labs every 4 months for at least the next year. It's a good day :) Tomorrow we are having my family over for swimming and dinner .... I guess we'll have to make a celebration out of it.
The after math of the biopsy....definitely NOT as bad as I had anticiapted it to be Dr Kasper came over this afternoon to check out Lil Man ~ have I told you how wonderful a doctor he is to Danny :) Making house calls on a weekend....he ROCKS! Danny is looking good! He 's having a pretty good day:) We've started the G-tube feeding ~ SLOWLY. He's up to a quarter strength formula reciped at 10cc hour from 9-5, we're giving him a break during the night. Tomorrow we are going to attempt half strength at the same rate and see how that goes. I can't wait till we can get rid of the TPN. Poor Lil Man has a rough time with the dressing changes so we've elected to leave them off. The wounds have stopped draining (been that way before we left the hosptail) so they are not really needed.

Here he is 11 days post op. Looking good Lil Man!

If you look closely on the right (top) side you can see the rod (it's kinda purplish in color) showing through the skin.

Avrianna is done with her summer running around and is enjoying her time hanging out with the neighbor kids. It's been so hot n humid they've been playing with blankets forts n the basements. Now that I FINALLY drained all the water off the top of the pool cover I'm sure they are all going to be splashing in there very soon.

REALLY ?!? What Next!

A storm is a brewing...the story of our weather EVERY day the last few days. I'm so sick of wet! Rain! Our drainage ponds are FULL FULL. Ugh~ NO MORE rain please!

But the clouds are just amazing to watch ~

As with with weather ~ a storm is brewing again with......ME. UGH~ I'm so sick of illness! I try NOT to ask "what next" as I know (all too well) there could be that something around the corner, BUT come on how many corners am I going to come across. I've had my fair share, that's for sure ~ I'm trying to stay up beat and shrug it off...but there comes a time when you just want to know "What the hell did I do? Was it a sick joke to have me on this earth? Do you just want me to crack?" You can only pick yourself up soooooooooo many times and then you start to wonder if you should just stay down. I'm blogging about it because I blog about everything and I'm hoping (as it has before) I'll feel better afterwards. I've blogged about the thyroid issues that I've been having before........the follow up blood work that I had before Danny's surgery still had shown my TSH level and a few others low. The ultrasound I had, had a nodule show up on the left side of my thyroid. I called my primary doc when Danny was in the hospital to ask "what next". I was told they still just wanted to watch it, come back in 3 months. Well I've been watching it for a year now and now I have a nodule...so I asked to be referred to a specialist. Yesterday I saw an endocrine doc. After he got ALL and the proper information (frustrating) we went through everything with a fin tooth comb. He was a very educated and compassionate doc, he even called me (personally) two time yesterday afternoon to ask me some more questions :) We went through all my labs and images from the last year and he found not only a nodule on the left but "something" on the right also. He looked at my head MRI's and found "something" on my pituitary gland, I've had issues with my pituitary for MANY years. Now I will be getting more images of both....Come to find out the thyroid and pituitary work together ~ in the scheme of things. So this morning bright n early (before 8am) I had to return to have more blood work done to check the functions of both the thyroid n the pituitary. The doctor had already called me (personally) a few hours after the test and even though they are low he thinks we can still watch them..... BUT ..... if the biopsy I go to tomorrow shows what he thinks then all bets are off. With the nodule on the left side he is disturbed by the shape and that it has calcium deposits in it. So he thinks it "could be" cancer. REALLY?!? If it is cancer it can be removed and treated very easily. So it's not that I'm necessarily scared (don't get me wrong no one likes that word) I'm just frustrated that it's ALWAYS something. I mean ..... WHAT NEXT????????? Ok I asked it, so knock it off already! I have enough on my plate, I'm FULL, OVERFLOWING even!!
I will keep you updated on everything that goes on. I have to go in next week for nuclear medicine imaging, and more MRI's. I have to be at the hospital at noon tomorrow and it will take alil over an hour for the biopsy and the endocrine doc called me to let me know he will be doing the biopsy tomorrow too. WOW! I'm not all too impressed to fast for 4 hours before (ugh no morning coffee, well I'll have to do coffee bongs before 8am LOL) and I'm definitely too impressed to have a needle stuck in my throat. YIKES!
Danny's been alil out of sorts since he's been home. I'm kinda bummed about it, as he's been quite fuzzy. We're trying to figure out where and why. He's so complicated that it could be a number of things. I'd give ANY thing if he could just point so I knew where to start. It could be pain, lord knows he's entitled..but he was so good the first week it's not top on my priority list. It could be cramping from his tummy starting to move and wake up. It could be his tummy from trying to feed him and it disagreeing or he could just feel hungry because he's getting his nutrition via TPN still. UGH!!! On the brighter side he has had BM's both yesterday and today all by himself WITHOUT enema's. CODE BROWN ~ Woot woot! We have bowel sounds! The process has begun, phew! Now to keep it up, Danny!!

Here he is 1 week post op!

All the bruises have popped up, poor thing! BUT it looks worse then he is acting about it. I'm so proud of him :)

If looks could kill........boy was he upset with us. This was after having to take the tape off for the second time because he solid the wound dressing AFTER we JUST changed them. Sorry buddy but it has to be clean!

This has been the face we've had to look at the last couple of days. He's just miserable! He doesn't like any position, sigh. Just breaks my heart to see him like this. He's been so upset you can hear him....he's been pushing the air right past the nose and up to his vocal cords. I ALWAYS LOVE to hear his voice, but not like this :(

The garden is growing like a weed (not to mention growing weeds, LOL). It's so cool to watch it grow from the seed to the produce. I wasn't sure how we'd do our first year at gardening, BUT we've done pretty good :)

Holy Corn!!

Fresh produce right out of the garden....it doesn't get any better then that :)

Thanks for stopping in to check on us....sorry it was such a downer post. I know some of you were really worried about me the last couple days. Don't worry ~ I'll be ok :) I've been VERY busy with Danny, I tried to keep myself occupied, and with all the doc appt lately I haven't alot of time to chat. I just needed to zone for awhile! Thanks for all your support guys....I don't know how I would do it some days ~

"North for the Fourth"

Friday I got word that Papa Dan was getting out of the hospital, so I loaded up the camper and the kids to head up to Tomahawk. Dan was already up there for a meeting so he had a head start on me. The drive went very well and I made in good time. I was pleasantly surprised that the traffic wasn't nuts. Once we got to Tomahawk and the camper was all set we met up with some of the other Osero's and had a good old fish fry :) Well here's the jokerster himself Papa Dan...all that he's been through and he still keeps a smile on his face, he'll tell ya a "story", and he ALWAYS tries to put a smile on every ones faces. We LOVE you Papa!

On the 4th it rained pretty much ALL day. We (Danny and I) hid under a building awning while Dan took Avrianna out by the street side to watch the parade & catch the candy in downtown Tomahawk. Boy does that town have the firetrucks! I think everyone was spit shinned and in the parade. Danny wasn't too impressed with the horns or sirens but hey they were firetrucks :) I was great seeing and chatting with family down at the parade. Danny & I walked through the craft sale with our close family friend Amanda the day before while Avrianna hung out in the river and Dan hung out with Tim. Yes, Amanda I went back and got the dalmatian set (cute set with the Momma and her 3 pups all made out of wood and painted). I had to do it, I should have just listened to you, LOL. It was so nice to see The Lang's and chat with them for awhile.
Ready for the parade!

Dan was cuddling with Danny in the morning and Lil Man was ALL smiles!

As a tradition in Tomahawk the fire dept has water wars in the the street amongst each other after the parade. Here Avrianna patiently waits for them to get everything set up

One dept is on one side and another on the other side and they spray each other till the Captain says which side wins. This is as close I wanted to get, I didn't want to get drenched

Once they are done ...... they spray the crowd and let the kids run in the water :)

All drenched! Avrianna and her fav playmate in Tomahawk, Whitney Osero.

After the parade we went back and got ready for dinner at Art n Jeanie Osero's. We had a blast, it's ALWAYS a good time with them. Not to mention we got extremely lucky as their daughter Lori was in town. She's a photographer in Vegas and Jeanie asked if she would shoot some family pics of us. OMG ~ I'm so grateful! I can't wait to see them. I wish I was more prepared as I didn't have "picture" clothes along so we just threw stuff together. Thanks Lori for taking time during your vacation to do that for us. You were wonderful with the kids :)

I have to go in on Wednesday for a thyroid ultrasound and more lab work so we'll see what comes from that. It's always something, right

Danny is still all set to go on the 13th for surgery, BUT he will not be able to do the PICC line placement here in the Valley before. We'll just go down alil earlier for them to do that before the surgery. I was told that the local hospital couldn't get the right catheter that Danny needs, that it isn't even made.......BUT CHOW is suppose to have it in there hands. So I'll be very interested to see who's right here, do they have the right one? Anxiety is setting in now that it's a week out, sigh. I can't wait till this is over with and we can put it behind us. I'm hoping we can get back to some "normalcy" very soon.

I've almost got Avrianna's birth to 1 yr old scrap book done. WOW - I didn't think I'd like to scrapbook so must. It's a DEstresser for me I think. Where did ALL this time go, my baby girl is growing up. Then I'm going to start Danny's book. At least I'll have something more productive to do at the hospital now :)

I will keep you all posted !