To My Anticipated Son

Found this poem that a friend posted on FB and just had to share.............LOVE IT To My Anticipated Son
I anticipated complaining of a waking baby;
Not of being grateful he's able to wake at all.
I anticipated the wonder of time rushing past;
Not of reflecting on milestones so small.
I anticipated crying at immunizations and bumps while learning his way;
Not of agonizing at more tests, evaluations, and word of more delays.
I anticipated choices over preschool, clothes, and scout troops;
Not of choices between hospitals, specialists, and which support groups.
I anticipated loving him, but enjoying his independence from me soon;
Not of loving him so much I'd want to keep him sheltered in my cocoon.
I anticipated health and perfection when my baby was inside, thinking anything less would be tragic;
But now that he is here, my special son has worked some kind of magic.
I anticipated anger and disappointment at this fate;
Not the joy and growth and knowledge that have become mine as of late.
I anticipated something different, that is certainly true;
But that's because I never could have anticipated one I love as much as you.

written to Tim with love from his Mom, Kathleen Hoppe, August 1995

Happy Doctor's Day!!!

Today is Doctor's Day! I just wanted to send out a HUGE thank you and a BIG appreciation to all the doctor's out there that help care for my kiddos. Without out you guys are lives would not be the same.....and my kids probably wouldn't be here today. I love you ALL and you ALL are apart of our family. Sending ((((((HUGS)))))) your way. Thanks again for helping me give my kids the quality of life they both DESERVE!! I know the road we travel isn't the easiest and I know that I can not be the easiest mom to deal with either, but as the BIG picture unfolds I just want you to know I couldn't do without you wonderful doctors.

Uncorporative!

Ms Kristi...................Look familiar?Today in Speech Danny did ABSOLUTELY nothing. He didn't play with any toys, respond to commands, or acknowledge our existence even. What a stinker....it was worse then any of your visits Ms Kristi, LOL. He DID shut his eyes and ignore...well he has the male reaction down pat just fine, heehee. He is so not on his game today, I hope it's just cuz he is tired and not that he is brewing something. Chicken Elmo didn't even spark his interest, which it usually does (Aunt Bonnie if you still have yours Danny would like to play with it too).

The Cheery outfit didn't rub off on him that is for sure! :) But boy he is cute....I'm partial though. (yes he sleeps with his eyes open once in awhile, yuck, freaks me out sometimes)

Enjoyment

We tired her out!!!

Well Nanny is here and the shopping as began....heehee! Today was the first day of rain in over a month, you know it's bad when the palm trees are starting to die. So what else to do but, shop oh and eat. I did most of the spending today, sorry Dan :)! We are enjoying our time with Nanny alot, Danny has her wrap around his lil finger and Avrianna doesn't let her out of her sight. We've been playing the game domino's every night after dinner and FINALLY Nanny won tonight, yippee :). Not too much to report.... Danny is doing well, still have some pain with the ankle but it does seem to be getting better. Avrianna is wore out every night, being so excited to hang out with Nanny. I am enjoying having adult conversations once again. On Wednesday night my Aunt and Uncle fly in and they will be here for 10 days, so more people Avrianna can pester, heehee. Thursday is my Grandmothers birthday, we are going to have a lil party for her, grilln steaks, and I am making a cake. It will be nice for her to have both of her daughters here on her BIG day, she'll be 76. Tomorrow speech therapy will be here in the morning then off to the pool we go. I finally got Danny in the pool on Friday for the first time since being here....with him being so sick and then having the diarrhea for so long being on those antibiotics I didn't want to take any chances, he enjoyed the pool time ALOT. We were in there for over an hour and then he took a 2 hour nap, the pool always knocks him out. I heard up north is enjoying more snow....don't you know it's spring?!? Thinking of you all ~ Take care.

What a Big Boy

Here is some of my favorite video's that show how Danny activates some of his switches. Hope you like them.

Make a Smilebox slideshow

Nanny is Coming, Nanny is Coming!

My mom (aka Nanny) is coming to visit for 10 days and she should be here tonight around midnight. The kids are going to be in 7th heaven.....they have her wrapped around there lil fingers, spoiled rotten, I say. Well that's is what grandparents are for, right? Please pray for her safe travel, good weather, and no delays! She has never flown by herself before, she gets motion sickness, and is intimidated easily so the airport thing is going to be rough on her. I have lots of wine for when she gets here, LOL. I am so proud of her taking this adventure head on and with no reservations about it. I think she misses her daughter, heehee, NOT..... I know it's all about the kids. I know with Danny getting sick she's been wanting to see him...she needs to make sure he is OK, she kinda funny that way. I am going to clean up around here and then we are off to the pool for some fun in the sun. The schools are off around here so Danny doesn't have therapy today, but Avrianna will need to finish her books before any pool time...I know I'm a stickler about keeping a routine.

Sibling LOVE!

Yes I am a picture freak! I was flipping pictures at therapy today and got this.........
PRICELESS!!!!! How awesome is this :)

She LOVES her brother...................and he LOVES her!Mom, aren't you going to save me?!? Is therapy over with yet?I just had to share :)

Danny is having boughts of pain in his right ankle since Tuesday. Not sure why this was brought on, but I am keeping a close eye on it. It doesn't bother him (unless stretched or flexed) it's not swollen, hot, or red. But still it's causing him some discomfort, sigh. :(

Avrianna had a blast at gymnastics today here is the inside of Gymnastics World.

Yes she's gotten taller and last falls outfit is too small .... that was the last she wore that uniform

She won this contest by stay up the longest ~ Yay!

Thanks for following us ~ Take care!

Circus Sarasota

Well here are some our favorite pictures of the Circus. We all had a GREAT TIME!! I'm trying out this new slideshow from Smilebox....let me know what you all think of it. Avrianna loved all the shows, she can't pick out a favorite! And Danny was hooting and hollering through the show. LOVED IT!

Make a Smilebox slideshow

It was funny ..... we had to do a pit stop through the show so while Danny and I waiting outside by the port a potties for Avrianna you could tell he really wanted to be back in the show. Here are the video's (I really like using Smilebox it's so easy and fast...thanks Bonnie). The first one is of Danny trying to find the show off to the right of us..can you tell. This video also shows how easy he obstructs, sorry for those of you that hold your breath with him, :) . The second is us on the road after the show (yes I was videoing him and driving at the same time, please don't try this at home, heehee) He was talking up a storm afterwards. LOVE IT!

Make a Smilebox slideshow

Thanks for checking in on us! Take care...I hope you enjoyed our show!

Thoughts & Prayers Needed

Ok this is going to be a quick update but with alot to say.....first off we are suppose to be off to the Circus in 30 minutes...and lil man is still sleeping. He slept through the night, was up for about an hour this morning, and now still out like a light. Keep your fingers crossed he's not brewing something. I am praying this isn't a relapse of this virus...it is brutal.
With that said:
Here is my list of sick kiddos that really could use some of you prayer warriors out there......
Ryan Prindle ~ Just found out full of infection and will be at hospital for about 3 weeks, at least
http://www.caringbridge.org/visit/ryanprindle
Cody Pizzela ~ after being if Florida for vacation came down with a virus in hospital for 3 weeks now and just reintubated last night
http://www.caringbridge.org/visit/codypizzella
Matt Eakins ~ went to ER this morning with Respiratory crap and now being transported to Children's St Louis
http://www.caringbridge.org/visit/mattheweakins
Melina Cunningham ~ wings were granted after a long fight of respiratory crap and infections
http://www.caringbridge.org/visit/melainacunningham
Moriah Nelson ~ fighting an undiscovered infection and going for Nuclear testing and biopsy today to see if they can find the source
http://momentswithmoriah.blogspot.com

Please take a moment and stop by their sites! Keep them in your thoughts! These kids are so strong they always amaze me with there strength, but alil help never hurts. They have a special place in my heart......an for some, I've never had the pleasure to meet in person, that's how amazing they are! Thanks
I will post pictures of our circus experience this afternoon. Sorry for the lack of updates the last couple days but really there was nothing to report....it's all good!

So Smart

Ok this is what I get to deal with on a daily basis.....what a smart cookie. Avrianna was very interested in the charting of Danny raising his hand for answers. So she comes back at me, after I told her what I was doing......"Mom, how do you know what his answers are....you might not check him because he didn't raise his arm, but the answer may be no to him and you just "think" it should be yes." Spoken from a true six year old....and you know what, she's right!! Way to go Avrianna you are more my teacher. So after thinking about her statement and how right she is...how do I chart him if I DON'T REALLY KNOW.

Well here is my lil smarty pants playing with her good friend, Julia. Tomorrow they leave and it's going to be very sad. For everyone...Danny really likes her older brother. Danny has such a positive reaction when he comes and talks to him.

They were inseperable when they were together and they played so well!

Bye for now Schmidt family....see you again soon. Hope to get to your neck of the woods this summer.

Avrianna was practicing with the camera again...she takes pretty good pictures, Don't you think?

Reading Festival

Today we went into Fort Myers and went to a Reading Festival. It was a nice time, the weather was great, and we got a few good books.

"Mom can we GO NOW!"Pictures courtesy of Avrianna ~ thanks girl....you're great with the camera! She wanted my picture on here too, ugh :)

You take it yet?We washed the van this afternoon too.....OMG ~ STOP IT, You'll grow up fast enough, lol. She looks like a natural. Don't worry Nanny it was just for the picture, she didn't drive! Danny enjoyed sitting in the front seat and checking everything out....look no wheelchair, yes Nanny he sat in the front, but we didn't go anywhere, heehee. He looks like such a BIG boy sitting there.So not too much to report but I like these days, and the kids are healthy so I can't really complain!! We are off to the couch to snuggle and watch a movie together. Take care

Fun Times

Another GREAT day here at The Osero's! Avrianna slept in, finished her school work (without causing me grief), and played in the pool with her friend. Danny and I even managed to get out by the pool for alil over an hour. It was so nice, we didn't go in, just enjoyed the sunshine. Avrianna's friends family are leaving in two days so I know emotions will run high. Those two girls are so sweet together. Makes me want to get this adoption stuff done and over with quicker when I see her interacting so well with other girls. She really needs a sister to hang out with, play with, and fight with.
They live in St Louis .... we are thinking of taking a trip there maybe this summer, so now we have another family we can visit. I would love to meet one of the kiddos that I follow (Mattman) and he lives in that area too...what a blast it would be to hang out and meet him in person. He and his family have touched my heart, they ROCK! I've heard St Louis has an awesome Zoo so we'll have to check that out too.
Danny didn't require ANY oxygen last night, was off ALL his machines ALL day again today, and hasn't (as of now) needed oxygen tonight. YAHOO!!!!! I can honestly say I think the bug has past. Yesterday afternoon is like a switch turned on and now he is back to the same old Danny. I am so overjoyed but still hesitant as I know how fast things can change.
I was telling the teacher and OT today when they were out for therapy about Danny's amazing strides yesterday. I had shown them the pictures of him holding his head high and proud and told them about his way of raising his hand as if to answer yes to questions. They too started to see him raise his arm to answer questions....this is all a dream for me, it's like I'm a hopeful mom and it's really not happening. Does that make any sense? But they reassured me that they thought indeed there is something there. I will be monitoring it closer and keeping track of his results for awhile. This is just so exciting! Boy did he get tired today during therapy....or overwhelmed, not sure which, but you could see it in his eyes. He had enough of us fussing over him. He was DONE! I am so proud of him, he's trying so hard, that's my boy. Avrianna too is very excited about our newest trial with Danny she can't wait to start ....oh boy watch out Danny I think we have a therapist in training, lol. She really gets into this.
Tonight I had my grandparents and neighbor over for Chinese and a game of dominoes afterwards. It was a great time and I'm still stuffed from all the food I ate. I can't believe I have so much left over...my grandfather said I'm not allowed to order any longer, as we're not feeding an army, lol. Avrianna went out to eat with her friend and then out for ice cream. Unfortunately I got a phone call with her crying on the other end around 8pm. I guess the keys got locked in the car so they were locked out and she freaked. I'm not sure what the whole issue was but she missed me and she didn't think she was going to be able to get back home. I tried to reassure her that it would be ok (I mean how cool is that locked out at an ice cream store...I totally would have taken advantage of that opportunity,lol) but it was already 8pm, she played hard all day, and she was exhausted.....so nothing was getting through to her. A few minutes later I get a call again from the family stating that she is really having a rough time and won't stop crying..."Can you pick her up?" What am I going to say, NO.....NOT. I luckily had my grandparents still over so they watched Danny and the neighbor and I hopped in the van to go pick her up....she was about 15-20 minutes away. I get about 2 miles before I was to get there and they call me...."We got the van unlocked so turn around we are on our way home." Are you kidding me? I had to have someone watch my son, drive for 30+ minutes for you to tell me to turn around? Whatever~ I was pissed! It wouldn't be so bad but the last time they had her (when I was in the hospital with Danny and my grandparents were watching her) they were suppose to have her home by 9....well they didn't get her home till after 10! It's the lack of common sense thing and respect that is driving me NUTS. Again cuz I sit at home with my kids I MUST NOT have anything to do. Ok don't ranting about that! Once she was home all was good! Still made out for a good day.
Blog family ~ Please keep another one of the kiddos that I follow in your thoughts as today she had to have an emergency intubation and has been fighting an infection for weeks now. She is having a really hard time right now and the family is too. Stop by and send them encouraging kind words through this very difficult time. http://momentswithmoriah.blogspot.com/

Rockstar!

I got these this morning and just HAD to share!

OMG ~ here is my ROCKSTAR holding his head up proud. I need to get me one of these mirrors! The first one was taken about 3 minutes into his task...and he was talking, LOVE IT! At one point we had to whole place cheering him on. This is so awesome!How appropriate....Dream in the background. And here she is Lil man's favorite....Ms Becky. Congratulating him after a GREAT JOB.

Spoken without words

What a day! This morning, I do have to say, didn't look to promising for our planned outings this afternoon. But this afternoon went wonderful and I just want to BRAG! It's been so "iffy" with my posts so some good new is needed. Danny was off his machine's all day, YAHOO!! We took everything as baby steps but he wanted to go mountain climbing, lol.
First we went to Avrianna's gymnastic session. She did great! They upped her to the level 2 from level 1 in just this one session. Way to Go Avrianna! I watched in amazement with the things she was doing....Back bends then flipping her legs back over, climbed the rope all the way up (about 2 stories and of course I didn't have the camera), and not crying when she reopened a wound on her elbow (she got it last week trying to skip in flip flops holding her drink, yeap multi tasker). She even went back out after the office cleaned her up and put a bandage on it. She's so strong.....willed, physically, and emotionally. I signed her up for Gym Camp during Spring break in April for 7 days. She is going to have a blast, 6 hours a day hanging out at the gym and doing her own thing. Now that she doesn't have any restrictions during gymnastics, watch out!
From Avrianna's gymnastic we headed right over to Danny's Physical therapy at KIDspirit (if you are in SW Florida and looking for a great place to take your kids for therapy...KIDspirit is the place to be, they are AWESOME!). Danny was breathing great, but he went ahead in filling his pants as we were walking in the door. After changing him boy did he pull out all his stops. My jaw dropped!! Ms Becky put Danny on his belly and braced his arms underneath him then.............WOW..............he held his head up high, turned his head from side to side, engaged in conversation and did this ALL for just over 5 minutes. Yeap ALL by himself! I of course didn't have the camera so started clicking pictures on my phone (thinking I'll just go buy the cable to download them to my computer) but then another therapist had hers so we took some with her camera and I'm awaiting the email so I can post them here to share. I was amazed....he's NEVER done this before . Some of you may think....he only held his head up for 5 minutes, but this is a HUGE milestone for Danny. I do have proof, I will post them once I get them! Then he started communicated with Ms Becky...again a first for Danny to EVER do this. She was telling me of his sense of humor that she saw when she was with him at the hospital and then proceeded to show me some of it. She start chit chatting with him and then would ask "Danny do you want me to shut up"....he would raise his left arm up. Ok I'm thinking just luck...then she would ask it again, and yeap he would raise his arm. Ms Becky started asking some other yes no questions and he would raise his left arm up with the appropriate yes questions. Am I seeing this? If this is a cruel dream....DO NOT WAKE ME. I am on such a high! We can't wait to see how Danny does next session. I guess he REALLY likes Ms Becky, she's his inspiration. I was going to try it when we got home and video tape it, but he was so wiped out with not being on machines for the day, getting out of the house, taking a shower, and working his butt off trying to impress Ms Becky he was out like a light tonight. I don't think he eyes were open when he hit the pillow. But you can bet on it.....we'll be trying it again and with the camera/video again.
It's with a heavy heart to report that one of our Caring Bridge kid followers was granted her wings today...with more respiratory issues. Please take some time to stop by their website http://www.caringbridge.org/visit/melainacunningham. You will be missed Melaina, thanks for allow us to follow your story and be apart of your journey's.

Better day?

I am hoping for a better day today then it was last night. Danny had trouble holding his stats up so I was up here and there cranking his oxygen up. It's weird how he is so up and down....really no in between. This roller coaster ride of an illness has GOT to STOP! I am keeping my fingers crossed this afternoon is a good one for him as Avrianna is suppose to go to Gymnastics (this will be her first time since we've been down here because Danny's been too sick for me to take her) and she REALLY wants to go. Then I would like to take Danny to PT today.....he hasn't had any stretching out (well any therapies for that matter) since we've been down here except for when Ms Becky stopped by to watch him in the hospital for me, thanks Becky :)! We I'll post later on how our day went. I just wanted to let you all know where we stand right now.....IT'S UP IN THE AIR, sigh.

Still Home!

Today Danny had a follow up appt with his Ped down here. She said he looks GREAT, but still doesn't sound too hot. We are going to stay home and continue cares here, she agrees that I can take care of him at home seeing we have all the equipment. YEA!! If he can't hold his stats well with the bipap and oxygen or if more seizures pop up then I have agreed to bring him back to the hospital. In the office Danny held his stats at 96 with room air...way to GO buddy, but I know all to well how fast that can change so I'm on guard. I am to bring him in to see the doctor once a week just for a check up so she can see how he is doing. Boy are we so lucky to have awesome doctors down here too!! The doctor looked in Danny's ears and his tube is still in his right ear...that means his drum didn't blow, it was just doing it's job and draining, but you knew that already Dr K, heehee. YIPPEE!! The doctor gave me another cream to try for lil man's butt...it is NOT GOOD! Not at all, it is so red it's almost purple and is now starting to blister and break open. That has GOT to hurt. I just want to put on ice pack on his bum in hopes it will make it feel better. I got ahold of the Pulm doc in Wisconsin so now they are up to speed with Danny. The nurse was going to let his doctor know what has been going on and possibly call his Ped down here with some words of wisdom. How awesome.... states away and they still take care of Danny.....plus work with the doctors down here, again what an AWESOME team of doctors Danny has. It makes my work alot easier when everyone plays together nicely, LOL

Happy St. Patrick's Day

Me and my lil Man!The gang of leprechauns!Miss You Dad!Trouble #1

Trouble #2May your day be filled with GOOD LUCK!

Here is a link to a new video I did of Danny today off all his machines. It definitely shows how much struggle he has to breathe. http://www.youtube.com/watch?v=3Fgx4DRB4WE

This afternoon wasn't too bad. I have most everything done and whatever isn't I have hidden in closets, lol. Danny slept most of the day so in between breathing treatments I was able to get my stuff pretty much completed. We had to increase his seizure meds do to the Grand Mall so I'm sure he will be sleepier the next few days. He is off and on with needed Oxygen throughout the day but is totally dependent on the Bipap or he really started to pull and get bubbly....watch the video....that is being of everything for 30 minutes. Ok got to go lil mans monitors are going off!

Glad to be home?

How wonderful to sleep in my own bed!! But it's alil bitter sweet being home, as most of all know. This morning I think everything really is swarming with emotions. I went to bed last night on E, totally EXHAUSTED so I left dishes in the sink and lil piles of things to put away all over. For those of you that know me that NEVER happens, so now I'm alil overwhelmed with everything that needs to get done (cuz it is all staring me in the face!) on top of Danny's cares and Avrianna's schooling/entertaining. I left some windows open while I was gone and now there is black gritty film over everything, wonderful. So looks like I am washing floors, dusting, and doing just an over all good cleaning (again, sigh). I need to get the laundry done too.

Here's lil man this morning after meds, breathing treatments and Mr Jiggles. He held his own being off EVERYTHING for about an hour but I needed to put him back on the bipap...then I needed to add O2. I don't get it, he did GREAT for 2 days in the hospital and then the night we are to leave, WHAM! I don't know, but this is going on 3 weeks, 2 ER visits, and 6 days in ICU and he still hasn't turned the corner yet to the point I know it's over with.....I"m frustrated cuz I know we could be right back to the hospital at any moment! He's better but again teetering on going south. I am going to soak him in the tub this morning, dress him in his St Patricks outfit (I'll post pics later), and hope for the best.

Here's Avrianna sleeping in and in my bed. I know she is frustrated too, cuz she wants life to be normal, but......Be Careful for what you Wish for. Even though we are home we can't leave the house...not even to sit by the pool. Avrianna asked this morning if she could walk over and visit Grandma/pa today, looks like she did have a nice time there. So sorry Ms Becky NO therapy yet! Danny needs his machines still and they are not portable so we are stuck inside. I do believe I will be returning to WI with NO tan, sigh. Avrianna on the other hand she looks like a beach baby. Ok need to get going too much to do and I'm already overwhelmed. I just need to get into that "Just out of the hospital routine". It's.......... 9:11 am, what's up with that!! I'm so sick of looking at a clock and seeing 9:11 all the time....telling me something?

Discharge

Our walking papers are in the works. The doctor came in and he spoke with Dr Edgar.....I LOVE Danny's Neuro Dr Edgar and his Ped Dr Kasper we are states apart and they still pull through for my lil man!!! I don't know what I would do with out them being my son's doctors. They worked out a plan together and we are OUT of HERE. I just need the prescriptions and a couple extra machines and we will be leaving. What a load off of my shoulders, as I was more worried about Avrianan then Danny...really that's how silly the last 24 hours have been, with them making all this a big deal. I miss Avrianna so much! Danny and I can't wait to hang out with her tonight. Movies, Ice Cream, my own bed, with BOTH my kids.....Now that makes me one Happy Momma. Thank You Dr Edgar& Dr Kasper for the PUSH they needed. I owe you guys cookies!! I need to increase his seizure meds and give Dr Edgar a call in a couple days. Danny already has an appt with his pediatrician down here on Wednesday morning so he will be assessed again in a couple days.
Ok I hope I am done posting for the day.....well maybe I might tonight yet to let you all know how he is doing, we'll see...tomorrow for sure. I just wanted to THANK YOU all for you support. Danny got another dozen Web Well Wishes this morning....I am going to save them a hang them up at home. Another bridge in our journey as been crossed I am hoping we are on a smooth straight country road for near future. Again Thanks blog family I got through it once again.....with a lil help from you!

Seriously!!!!!!!!!!!!

Ok I knew I should have gone back to bed and started this day over again or just stayed in bed till it was over with. The last post from this morning was a good one that we were cleared from the Pulm doctor and the awaiting to hear from the ICU doctor. Well he popped his head in at the most WORST time ever. We had just given Danny a bath and got him in his chair. We must have jarred some goo out and he wasn't holding his stats well (again destating around here is 92, sigh) so when the doctor was chatting with me the whole time lil man was at 88-90 and monitors where going off, OMG this is NOT happening to us. So he ordered oxygen stat...mind you Danny just got a bath, moved to his chair, and has been fighting sleep since 3am, so the doctor thought it a good thing if we stayed so they can "monitor" him. Plus they want to get a Neuro on board down here and possibly have an EEG done.....If Danny wasn't so damn cute and smelling good I'd paddle his butt right now,lol. So I've been calling his ped Dr. Kasper and his neuro Dr Edgar up in Wisconsin for them to free me from here. I have given them both the ICU doctors # so they can talk to him and let him know it's ok we can go home. I am capable and VERY WILLING to get out of here. I know that Dr Kasper has already talked with the doctor down here and helped plead my case but he is hell bent on talking to Dr Edgar. They are concerned with the seizure because it isn't Danny's normal one.....ok again he is sick, he is in precocious puberty, and I'm not afraid of them. Yes they suck to watch and you wish you could take it away, but this is our life, BE PREPARED! Which I am. I have all the equipment and all the meds that he needs at home...I can monitor him there, plus I do know how to dial 911 if things should get bad. Avrianna's friend went to Disney today so the phone has been ringing!! Tears and all she is pulling out all the guilt trips so I WILL be going home TODAY....... OK Dan these are SO YOUR KIDS!!! LOL. Of course the ICU doctor started rounds after he popped his head in ... at the other end of the floor so I won't see him for awhile yet. I hope we get out of here before dinner!

One to go!

It is 8:30 and the Pulm doc just came in and said Danny sounded good and he is signing off of Danny's case. He is clearing us to leave....so I am just waiting for the ICU doc to clear us too then we are out of here. I am already showered, bags are packed, and I've had a pot of coffee so I'm ready. I hope the ICU doc clears us and the seizure last night doesn't set us back. Cross your fingers....I will post once I see him, I hope he doesn't wait till this afternoon to round!!!!

Alarms

So I could never understand why they set the the monitors to alarm as they do nothing about it anyway. It is 5am and we've been up for about 2 hours already. Danny's monitors have been going off for the weirdest thing tonight, with no reaction from the nurses, so they let them just go off in the room. And they can't understand why we are awake already? Let see .... an ungodly beeping going off over and over again, hmmm? Really you can't figure it out? Don't put the damn things on if you are going to let the just go off!!!! Then they have the oxygen stats to alarm at 92, are you serious? Ours at home are set to go off at 88 and that goes off once or twice a night, so take a guess how many times it has tonight/this morning. I am tired and emotionally exhausted! Can you tell..... I am going to hop in the shower now in hopes that the doctors will round in the am and we can break out of here. Wishful thinking, yes I know. No more seizures from lil man last night but the congestion is still there and strong, so I am praying they still let us go. I woke up this morning at 3am with a splitting headache and that is NOT helping my attitude....hoping the shower can make things all better and wipe my slate clean this morning. It isn't starting on a good note, AWE NUTS! If you haven't read last nights post of excitement, please enjoy.

Jinxed myself

Ok I said it and now I'm paying the price!!!!!! UGH!!!! I am going to pull my hair out I swear. Well at 9:15pm this evening Danny had a Grand Mall seizure that last about 30 minutes. We needed to give him the rescue med diastat so he would come out of it and start to come around. He got as stiff as a board, filled his pants, his heart rate raced to 210, respiratory rate jumped to 60 rpm, and his face was as red as a Fire Truck. So another trick he's pulled out of his bag .......unfortunately or fortunately it happen here at the hospital......All on how you look at. Not sure what that means for tomorrow's discharge. Avrianna is going to be pissed if we have to stay! As long as that seizure was it tonight and we have no more "excitement" here I can't see them keeping us for a seizure though. I will keep you posted on what's up!

Tomorrow!

The doctors were just in.....it's 3 in the afternoon (it's so a weekend) and they told me that we are going home tomorrow. They want 2 more doses of steroids in him as he still sounds very congested in his lungs. Then we can continue the rest of the treatments at home. His lungs really took a hit with this virus so we have to stay aggressive when home. I will still need to do breathing treatments every 4 hours around the clock and they are going to change his antibiotics over to G-tube instead of IV. At least we will be home and with Avrianna.
I wish we were out of here today...I really miss Avrianna. She has been such a good girl with all of this. I owe her BIG time!
Oh yeah the C Diff test came back negative so the diarrhea was just from the Zithromax, that is good to hear.
I NEED to get out of here! This place is driving me NUTS the walls are closing in. Tomorrow..there is light at the end of the tunnel.

Good NEWS!

Look ~ nothing in my nose!!!Danny is off the oxygen and on room air. His stats are about 95 so he is doing well. The xrays from this morning are "MUCH BETTER", from the mouth of the doctors. They are decreasing his breathing treatments to every 4 hours instead of every 3. They are taking him off Zithromax (one of the antibiotics) and decreasing his steroids amount. We have had to change 4 exceptionally watery dirty diapers already this morning so they are going to culture it for C Diff. "Told you so!" This also the reason taking him off the Zithromax...this can cause diarrhea. They are going to do some more labs because of him loosing ALOT of fluid, with the watery diarrhea, they want to make sure his electrolytes are in check....if not he has more intense seizures. So with that being said:
"The Plan" is....
1. See how his stool cultures come back
2. See how his electrolytes are
3. See how he does with the decrease of breathing treatments
4. See how he does with being off Oxygen.
If he is stays stable the next 24 hours we can talk about going .........I'm not at liberty to say or type the word, as we all know when I do Danny will take the wind out of my sails, LOL. So keep your fingers crossed. We gave Danny a bath this morning, changed his bedding, and got him up in his wheelchair for awhile, until he started filling his pants, yuck! We are chill'n out watching Cars right now and he is a happy boy....see, this picture is for you Nanny, now stop worrying! He looks great and even a SMILE. Doesn't that just make your day

Danny and I got a visit this morning from Shauna...another friend from Kidspirit. Not only are they AWESOME therapist...they've become GREAT friends....THANKS GUYS ~ You are the best! Friends like you guys are hard to find! When Shauna was here I was able to take a shower, it's amazing what some water and soap will do to your attitude, lol. Then I ran downstairs for a Chai Tea Latte and a brownie.....it's the simple things in life, right? Thanks again you guys! Danny loved having both Becky and Shauna here too, he's alil FLIRT. I will post tonight on how today went. Thanks for following our journey!

Red in the face

Here is his wall of WEB WELL WISHES ~ Thanks to all of you for your kind words and support. Danny loves listening to me read them before they go on the wall infront of his bed, so he can look at them!Finally resting peacefully! Then they came in and put Mr Jiggles on him and to do his breathing treatments....he's NOT sleeping now. I think he is going t sleep for a week once we get home to catch up. They come in and do their thing every 3 hours sleeping or not. Thanks for the balloons Griff, Danny misses you.Close ~up of my lil manAn even closer up ~ notice his poor red cheeks...ok red face!This afternoon Danny had a visit from two clowns, Chucky and Karen. Danny wasn't too sure about them....they were talking silly and asking him things. One question was if Danny ever saw a circus...I replied no, but we tried to see The Sarasota Circus last year when they were in town but they couldn't accommodate us. If you remember last year I tried to go but in the handicap section they only allow the wheelchair and another person, so they said I had to have Avrianna sit by herself in the next section, NOT! So I told the clowns that and let them know that we didn't go because of it. Then Chucky became very apologetic and said no that's not right....I'll make it right. Well come to find out these clowns weren't your everyday clowns...they were the clowns in the Sarasota Circus. So he gave me his card and wrote on the back of it....told me to show up at the tent, have them call him, and he'll take care of us. WOW ~ Thank You Chucky....there are still good "clowns" around. Now I just hope I can get lil man out of here in time so we can go! As they were leaving and saying their good byes Danny turned his head looked at them and gave them both the BIGGEST SMILE :) I know Danny knows what going on around him ... HE KNOWS!

Danny also had a visit from Ms Becky too....she was so nice to come and stay with Danny while I went home to get some more clothes and visit with Avrianna. Unfortunately I got stuck in some traffic so I was gone longer then I had anticiapted, but it was still nice to get out. Thanks Becky you are a good friend. Once I unpacked my to go bag and then repacked it again I stopped by my grandparents. Avrianna was gone visiting with her friend so I went down to see them. I chatted briefly with her family.....we met them last year and they touched my heart. Avrianna's friend has two brothers and one of them having Downs. The mom and I contacted immediately and the oldest son just wow'd me with his comfort level and interest into Danny. This family ROCKS! I hope we get out of here so I can get together with them myself ....have a few glasses of wine and chit chat before they leave to go back home. Ok back to where I was going with this, sorry. Avrianna and I went mini golfing and had a blast together. She is such a good girl while Danny is sick, but who wouldn't when you are getting spoiled rotten all day. Well right now I'm not too worried with her as the next couple days she is going to be busy hanging out and playing with her friend.
Here's my student....doing her homework in bed, LOL, this is Wednesday morning right before I took Danny into ER. Had to post a picture of her too.

Thanks again for taking time out of your day to follow our journey, and what an adventure it has been lately. Take care! There has been no word of discharge as of yet...I am hoping Danny gets better and the word comes about tomorrow sometime. At least a time frame of when.

Update

Danny is about the same...no real changes, at least for the better. He is tugging alil more with breathing, and the xrays are about the same, so we are going to be here for awhile. They are going to start putting him on his bipap during the day to help him breath alil easier.
Danny got another visit from a dog today...this one was dressed up as a leprechaun. Danny really loves their visits. He even smiled at the dog today. Yesterday Danny even got into one of his laughing fits again. It scares the hell out of me at first as it sounds like he is crying..then you see the smile and the laughter. It's awesome, seizure or not!
Ms Becky (Danny's PT) is coming to the hosptial again today to relieve me. THANKS Ms. Becky! I am going to run home to get some things and hang out with Avrianna for awhile. If she isn't too busy, heehee. She is having a good time with her great grandparents (I think they are going to need a week long nap after keeping up with her for awhile) as they are keeping her busy with games, swimming, and they let her have ice cream alot. She is going to want to stay with them, LOL. Avrianna does have issues at night, but that is to be expected. I know some kiddos are going to be around our community this week, visiting their grandparents, so she should have a blast playing with them. I hope!
I will post more when the doctors come in and tell me what's what.
The Web Well Wishes are great, thanks guys! In one day we got a dozen and they keep on coming. I read them to him and then post them on his wall. Everyone is commenting on his cards, you guys rock!Here is the link to the Web Well Wishes: http://www.leememorial.org/cards/wellwishform.htm you can fill out this form with (Danny Osero room#2907 and at the Children's Hospital of SW Florida) and alil note or well wish from yourself and they print it out downstairs and deliver it to his room. So if interested in sending Danny something send him a well wish. They are pretty cool.

Another Update

Another appropriate day for this picture! Well the Pulm doctor was in and he was very nice. He had the time to sit down and talk about ALL Danny's issues. He did comment that the xrays definitely show signs of infection, sigh. His cheeks are fire red now...they say that is from the strong steroids. He looks like he's been out on the beach too long, LOL. The doctor assessed Danny and said his lungs are crackling and wheezing, that doesn't sound too good.
Danny also got a visit from two therapy dogs today...he was SO into that. The Pomeranian they put in bed with him, it was too cute, and they had another dog that was bigger (I can't remember the breed, but about Bailey size) and it looked like a long haired Dalmatian. How appropriate, Danny LOVES dalmatians. Her name was Dottie and boy is she a mild mannered dog. She put her paws up on the bed and laid her head down right on Danny's chest. How sweet!

Ms Becky (Danny's PT) stopped by to say HI and see Danny. We have had to cancel ALL of our appointments with her since we've been here because of illness. So instead of us going to her she came to us....and Danny thought he was free, NOT. Thanks for stopping by Ms Becky it was nice to see you and chat. You start to go stir crazy in these lil rooms. Danny even enjoyed visiting with her...she even got a smile....what a flirt, lol. He is just trying to sweeten her up for when he does FINALLY get to have her stretch him out.

We MISS YOU TOO sweetie....thanks for being such a good girl!

Two disappointments today...first when Avrianna came to visit I was immediately told that other children are not allowed in ICU, not even the siblings. So she was pretty upset she couldn't stay....and so was I. I hope we are out of here soon. Avrianna has been such a trooper through all this. I promised her when Danny and I broke out of here....I would take her mini golfing and to go get an ice cream treat. I felt terrible that I couldn't have her stay!

Then second they started another antibiotic on Danny so that will make three that he is on today....one IV and two orals, not to mention a total different one he was on last week. That is the best cocktail for C Diff which Danny is prone to get. If he should get this nasty bug then he goes into isolation and an extended stay for about 10 more days to kill the bug he got from them putting him on antibiotics. I will be one unhappy Momma if that happens! I told the nurse to inform the docs and staff if he does get it, Avrianna WILL be here with us. This SUCKS!!

Update!

Danny is still VERY WET in his lungs! I have not heard from the Pulm doctor yet. Danny is holding his own though. He is having issues still with holding his temps up so once again he has a warming blanket on. I cranked the heat in the room too :) He was at 99 and went back down to 94 pretty fast. I'm not sure why this is happening...he has been having cold temps since his surgery and this is all new to me. I love this warming blanket it is so cool, well HOT, heehee.
I will keep you updated. Avrianna is on her way to come and visit so we are excited to see her.
Danny received this Web Well Wish card from his BFF Griffin, it is so neat. I thought I would share the site.... http://www.leememorial.org/cards/wellwishform.htm you can fill out this form with (Danny Osero room#2907 and at the Children's Hospital of SW Florida) and alil note or well wish from yourself and they print it out downstairs and deliver it to his room. So if interested in sending Danny something send him a well wish. They are pretty cool.
Thanks again for following us and your kind words. Your support is wonderful!

Pnuemonia

The doctors just came in and this mornings xrays do show both lower lobes having significant white matter. So they are now treating him having pneumonia and they think possibly his lower lobes have collapsed alil. Now the needing of higher levels of Oxygen make more sense. Danny has increased his temp now ...he is about 99 which is a great improvement from the 93 when we got here. His face is very flushed and he is still struggling to take a breath, but he isn't as wet/junky today. I haven't had to suction him as much. They are doing breathing treatments, Mr Jiggles, steroids, antibiotics, and lasix (to help get rid of the excess fluid) all day long in hopes to help him out. About 2 this afternoon they are going to repeat labs. They called in a Pulm doctor to look at Danny while we are in house...so now he will have one down here that will follow Danny, That's GREAT! So the plan is to continue with the treatments, get the Pulm docs opinion, take a look at tomorrows xrays and then get the real "PLAN." Looks like we will be here till at least tomorrow night, sigh! I'm glad I have my computer to have touch to the outside world. I can not update or get to my facebook page so for those of you that follow that....it won't have any activity till we get home. I talked with Avrianna this morning and she is having alot of fun with grandma and grandpa so she decided to stay with them and go swimming 'n stuff, other then coming here to watch some tv, figures. I am glad she isn't having a rough time with this .... at least it makes the stay more bearable. Plus the staff here is WONDERFUL with him. THANKS !!

Bag full of Tricks

Well it's almost 1am here and lil man is resting. What a long day .... but the night seems to be even longer. Even though he is sleeping, he is sleeping too sound. He is being a stinker, I'm starting to wonder if it is just me. I had to leave briefly (yeah I know I left him, something I try VERY hard not to do, but they are AWESOME here.....highly recommend coming if you're in the Fort Myers FL area) to go get his bipap machine and mask because he wasn't doing well with the hospital one at all. While I was gone the nurse sat with him, he was on 5 lt of oxygen and holding his stats about 95 he was such a good boy. Then I get back, and here we go again.....he has his bipap on and now he is up too 6 lt of oxygen with only stats of 92. What a lil twerp!!
Well this morning Danny wasn't his best so I decided to bring him in for xrays. Of course we had to go to the ER to have them done, but I figured in and out no problem............NOT!! Danny got so bad, and of course it was in the van on the way to ER, his stats dropped to 75 for about 5 minutes. Let me tell you his color at 75.....not pretty at ALL! Even though blue is his favorite color it really doesn't work well for his skin tone. He is just so JUNKY, again it sounds like he is drowning in his own spit. Once we walked into ER Danny got a DO NOT PASS GO ticket right into a room, so that was nice. The xrays still show nothing too significant, WAY TO GO! So we are ALL stumped at why he is so wet and not holding his stats anymore. I am constantly suctioning him! Danny had an episode in the ER room (destated) and let me tell you do nurses and docs FLY in the room. That bought Danny a ticket upstairs....and none the less to ICU. So after spending 10 hours in ER we are now in a room. His blood work looks good too so no infection as of yet either. They did say his right ear no longer has a tube in and the drum has burst...NOT GOOD! Danny is VERY cold and has a VERY low heart rate, yeah I know SO NOT Danny. Again we are stumped with what he has or what is happening. They have this awesome air blanket on him right now to warm him up...I would like to crawl right in with him....but would rather spend my time laying on this wonderful couch they call a bed, LOL.
Well the is it in a nut shell. Thanks for following us. Keep Danny in your thoughts! He needs it right now. Oh yeah ~ don't worry my grandparents are still down here so Avrianna is hanging out with them getting spoiled ROTTEN, Yahoo. That is awesome ~ Thanks guys!

Admitted

Just a quick note......Danny was admitted to the ICU dept at Health Park Children's Hospital today. Another Respiratory distress, his stats got as low as 75, YIKES!

Hair Cut

So here's my lil princess with her new hair cut. She likes it!She wanted it shorter in the back and longer in the front...she must have seen one of the girls at the pool with the style. I did my best!! Not sure if I like it, but we'll see. Like I say it's only hair it'll grow back.Danny is still congested and today he was breathing so fast you would swear he was running a marathon. I tried to download another video of him breathing but the computer dropped off line losing the download, but you get the picture. I think I'm going to give him a hair cut tomorrow. I WILL remember to put the guard on this time....PROMISE! LOL

Today Danny had Speech therapy and he did pretty good for being ill. We discussed the possibility of using a Tech/Talk 8 device with Danny in aiding him with his communication. This device will scan over 4 to 8 items....telling him what they are and when it gets to what he wants, Danny has to activate his switch so it stops scanning and that will tell us what he decided. I'm super excited about it. We'll see if they have one we can try.

Tomorrow we go out for PT at Kidspirit. I can't wait he NEEDS to be stretched out something fierce, sorry Ms. Becky you will have your work cut out for you. Then Wednesday the Assistive tech lady is coming to show me how to do some fun thing with Danny on the computer and discuss the possibility of some new switches to try with him. I will let you know what comes of that.

Today Danny's lil butt started getting so sore. So now not only is he having respiratory crap his butt is red. I loaded it with cream....I hope it works. I'm not sure if his skin has had enough of the wiping cuz of the antibiotic runs or if it's that acidic now. Where ever the mess hits his skin it's now red, instantly. Poor thing! I just want him to feel better and SOON! My mom is going to be flying down the end of the month so if he's not 100% you can bet she'll try to whip him into shape, heehee. NOT ~ she'll just cuddle with him and tell ME WHAT to do, LOL. Boy I GOT to get this boy better before she gets here.

Thanks for following our story. Take a few and drop us a line to let us know you stopped by. The kids love it when I read them your posts too!

Tiny Bubbles ~ NOT

Alot of Bubbles!!

Well congestion set back in this morning, yuck. So back to suctioning and Mr Jiggles all day long. Danny doesn't mind it, so that's a good thing.

Here's my lil helper....she likes to vacuum, she's NUTS! Avrianna has her room full of blankets and towels cuz she made a fort today. We might venture out to the store later, but other then that It's going to be a low key day.

Yesterday we had a lazy day and went to the pool. Danny fell asleep so he chilled out under the shade. I'm so not going to get him in the water till I see a a BM with some significant substance. I don't need to be causing any more grief then I already do around here, heehee. He is just love chill'n out in shorts so no worries there.

Broken Hearted

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

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

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

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

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