Monday, March 30, 2009
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
Sunday, March 29, 2009
Friday, March 27, 2009
Thursday, March 26, 2009
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 :)
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
Thanks for following us ~ Take care!
Wednesday, March 25, 2009
|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!
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
Cody Pizzela ~ after being if Florida for vacation came down with a virus in hospital for 3 weeks now and just reintubated last night
Matt Eakins ~ went to ER this morning with Respiratory crap and now being transported to Children's St Louis
Melina Cunningham ~ wings were granted after a long fight of respiratory crap and infections
Moriah Nelson ~ fighting an undiscovered infection and going for Nuclear testing and biopsy today to see if they can find the source
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!
Sunday, March 22, 2009
Saturday, March 21, 2009
Friday, March 20, 2009
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/
Thursday, March 19, 2009
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.
Wednesday, March 18, 2009
Tuesday, March 17, 2009
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?
Monday, March 16, 2009
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!
Sunday, March 15, 2009
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.
Saturday, March 14, 2009
"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!
Friday, March 13, 2009
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.
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.
Thursday, March 12, 2009
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!
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!
Wednesday, March 11, 2009
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!
Monday, March 9, 2009
Sunday, March 8, 2009
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.