Twinkling Smile

Kodak moment......I just have to share. While Lil man was relaxing on the couch today I put the telephone to his ear, when I was talking to Dan. Danny gave me this look of what is on my head and then Dan spoke...........OMG, the smile that instantly appeared on his face when he heard his daddy's voice. He was so excited he was opening his mouth as if to talk but he just couldn't find his voice today, that's ok, the smile said it ALL. I wish I had a camera to capture that. We MISS YOU DADDY...see you soon!!

Today was very dreary around here. This morning it was VERY windy and by the afternoon the rain came in. With the high winds and HEAVY rain it was a good day to stay inside. So I cleaned the condo, did laundry, watched movies and played games with the kids. Avrianna put up a blanket tent in my dining room and she "thinks" she is going to sleep in there tonight....we'll see how long sleeping on a tile floor will last, heehee What a good day to get caught up on things around here. Now we are all ready for Dan to come back, he will be returning to Florida late Tuesday night. The neighbors have asked if they could help out by watching the kids for me so then I can take the van to the airport and leave it there for when Dan comes in (around midnight) and then I don't have to drag the kids out to pick him up. Thanks, Linda & Collin!!

Tomorrow Speech will be here in the morning and I am assuming she will be taking back the toys/equipment as this will be her last visit till we come back in February and they won't allow me to use them for our "visit" back to WI. I might be able to keep them till Thursday and give the stuff back to the Teacher when she comes on her last visit. I hope so as I will be able to show Dan some of the cool things Danny has been doing down here. I have forwarded the things Danny is using down here up to WI to see if we can get the equipment and programs that he is currently using and is so much enjoying.

***Again please send your pictures and messages for Danny to me as soon as possible so I can get his TOUCHED BY DANNY'S LIFE scrapbook completed by Christmas. Avrianna and I are so excited to put it together for him. What a wonderful keep sake that we can continue to add to and to enjoy forever!! I am so hoping it will turn out like the vision I have in my head.

Take care!

Comedy & Anxiety

Last night the kids and I went out to eat with our neighbor and my grandparents and had a great meal. I was stuffed! We went home and I had all good intentions of going to bed early as I needed to be up and out the door by 7am this morning to get my grandparents to the airport. But.........Danny has other ideas, heehee. As I was putting the kids to bed at quarter to 9 last night Danny finally decided to poop, YAY!! So as I was lifting his legs to change his diaper he let'r loose and pee'd all over himself. uck! First issue was he was peeing without a diaper.....Second he pee'd in his face so it was everywhere on him....and Third he decided to start to choke (so obviously it went down his nose or in his throat, YUCK!). So once the extreme crisis of choking was over with (god I hope this isn't an aspiration) I then stripped him, the bedding, gave him a bath, washed the wedge, and then used the blow dryer to dry it (thanks Bonnie), and made the bed again. Then I started to freak out as reality hit he had pee on his face.....is that ok?........do I need to do anything other than soap?.......Will it give him an infection (as it was in his eyes, nose, mouth, ears, hair.....yeap he did a VERY good job, way to go buddy!) I washed his face again before I put him to bed and brushed his teeth twice, LOL. Danny was so tired after all that he fell asleep in the shower and didn't wake up even when I was getting him ready for bed, (again) or when I was setting him up to his machines and he always wakes up when I put the Bipap on him if only for just a lil while. Boy what we'll do for a good time around here :) Avrianna was such a GREAT helper....she jumped out of her bed (they sleep in the same room here) and was grabbing a cover for him and helped me strip his bed, I am so proud of her! She is such a GREAT big sis to her brother.
Once things settled down and the kids were all tucked into bed Avrianna started to cry about the surgery. She is starting to freak out but is trying to hold herself together cuz she knows her brother is going to have surgery too. What a trooper! Looking back through all her episodes, crisis', and treatments she has been awake and aware of everything. She felt and remembers EVERYTHING, so trying to tell her she won't feel or remember this is not sinking in for her. I feel just awful, but know in the end (with no spleen and gall bladder) she WILL have a better quality of life. I see her fear, I hear her fear, and it's killing me. Not only for her but for Danny.....this is a real slap in the face when he can't say or do anything and after 13 surgeries I've never had this crying fear with him....he just goes with the flow and in this respect I wish he could be scared......Know what I mean? With seeing what a "typical" child goes through I can only imagine the resentment he feels after 13 surgeries. I feel awful!!!!!! Not to mention I feel differently with this surgery experience.......This is Avrianna's first surgery and I'M FREAKING OUT....now does that make any sense I've been through how many of these. I am scared to death! But once it's over then she is good to go and the recovery should be a walk in the park compared to some of her crisis' recoveries. Then with Danny I'm not afraid of the surgery so much (maybe cuz it seems so routine, I know that's terrible too) but with the recovery I'M SCARED TO DEATH! I don't want to hurt him or see him miserable for that long. The unknown of recovery time 6 weeks or 12 weeks and the unknown of will it be a brace (please pray it is as with his sensitive skin I know he will have SEVERE skin breakdown with the other alternative) or in a cast which will make his and my life alot more miserable. How do I carry my lil man without hurting him, How will he do with a brace/cast for that long, Will the ITB pump be ok as one of the incisions will be right on top of where his "puck" is and will it cause an internal infection? My head is spinning, I get knots in my throat, and I have a pit in my gutt. Yeap I'm a wreck about this. I can't wait till it's all over!!!!!!!!!!!!
I've decided this year NOT to have a birthday party for my lil man and I feel terrible. I've always had a BIG birthday bash for him but this year I think will be too much for him. He will be the BIG 5 on December 23rd and with his big day being less than 2 weeks after surgery I'm not sure he or I will be ready for a party. I'll definitely have a celebration for him but will lay low with just us. I'm actually considering NO Christmas either. Just sitting home opening our gifts of course but then no going from house to house just us by the fire place and sitting in our jammies! It will be different but I might like different!
Today Danny has PT at Kid Spirit and Danny was pooped out or uninterested as he slept through pretty much the whole Session. Ms Becky still stretched him out, heehee so no worries. I did do some smiling after on the ride home but didn't make it too far and was sleeping once again. So it wasn't you Ms Becky, LOL!!!! Now if I could only get him to sleep through the nights again. I miss sleep! I was spoiled as he would sleep from 10-7 now I'm lucky if I get him to sleep till 4, sigh.
Well Take care and have a SAFE and HAPPY THANKSGIVING!
**Please remember if you'd like to participate in Danny's Christmas scrapbook.....send me a picture of yourself/family and a message I can attached with it to Danny. Then I can read and show him how many people have been TOUCHED BY DANNY'S LIFE!

Wind Chill??

Well I can't seem to stray too far from the cold temps for long. Tonight it is suppose to get down to the low 40's here in Florida and with the wind chill (yeap you heard me WIND CHILL) it could get into the 30's inland. To me that is "normal" but around here in Florida.....we it's just freezing for them!!!! The jet stream is coming from the north which is pushing the Wisconsin temps down to me...oh wonderful. Tomorrow the high is suppose to be mid 60's and then it is looking like the next days will start warming up to "normal" around here. Avrianna can't wait to get back into the swimming pool!

Danny must be upset wearing pants for the second day in a row as he was less then corporative in PT today. Everytime Ms Becky tried to do something with him he would shut down and fall asleep. She even brought out cool toys for him to play with and NOPE....NOTHING! He had attitude today! What a lil stinker, literally. When we got home he filled his pants twice. I think it was too much work for him to do PT and his duty all at once so....shut down during PT (sorry Ms Becky) and then give me the "gifts" when at home. LOL! After that he was all smiles and even vocalized a bit. Tomorrow I hope he will be better in therapy...but with PT even during sleep he can be stretched, heehee. I took Avrianna with us and I think she had more fun there then he did. There were alot of toys and Ms Becky let her play with whatever she wanted to (except the paint,lol). She can't wait to go back tomorrow too :)!

During our recharge movie day this weekend my lil girl gave me one of those AHHA moments. We were watching Racing Stripes and she couldn't understand why the horses were picking on the zebra for being different. She said she would help to teach him things. Then she was going on and on how she wouldn't pick on him and what she would do to try make friends with him because "it's ok to be different". Avrianna is becoming a beautiful, considerate, compassionate lil girl and I am so proud of her. The bond that my two children have ~ NO OTHER will be able to replace. It just warms my heart! :)
On that note we are still completing our homestudy and it should be done by Jan-Feb. I have started looking at photolistings again of children, but I know I can't get me heart set on one( or two) yet. Just looking, :) Breaks my heart to see all of these kiddos needing a forever family. They are just waiting for someone to say you are mine lets go home! Talk about the ultimate gift to be able to give someone ~ A FAMILY! The waiting game is the hardest part of the adoption process that is for sure. I am hoping that because we are not looking for an infant that maybe the placement process won't be as long but I also know it could take awhile. What a journey and adventure, I'm so excited!

I think Avrianna might be wishing for 3 front teeth for Christmas. Her one top front tooth has been loose for a few weeks now and today the other one started wiggling. Both her bottom front teeth are "big" teeth but one right by those also has been loose for a few weeks so it's just a matter of time when they come out. She can't wait till they fall out and I keep telling her the tooth fairy is going to go broke if she looses them all!!!! HEEHEE

My back is sore today....must have pulled something in my lower back, can't figure out why, lol. It hurts and when I walk I get this pain that shoots into my rear......Avrianna keeps laughing at me and saying I'm a pain in the butt. Got to love her!! I guess lifting lil (husky) man everyday is starting to get to me. I know, I know but he's MY lil boy and I just can't see having a lift carry him for me, he's only 4. Mom is suppose to do that? I am so scared that he is going to get too big I won't be able to hold/carry him any more. That's all I got is to hold my boy, let him know I love him, and I'm there for him. What am I suppose to do when I can't anymore? My heart just breaks ~ I wish I could hold him tight and close to me FOREVER!

Take care! Please keep Danny's friend Ryan and his family in your thoughts as he has pnuemonia now too. ARGHHHHHHH Griffin is doing better, YAY! It's way too early in the season for these kiddos to be getting sick already. Praying that this isn't the path for this very long season.

Veterans Day!!!

THANK YOU!! To all the men and women who gave us our freedom. I know that you gave up SO much for us.... good and bad.....you never are the same as I find some people find themselves in the military and some lost themselves not only physically but mentally in the military and for that I THANK YOU! Going out into the unknown and not really knowing what you'll find is a step that not all too many can move towards. You truely are HERO'S, ALL OF YOU! This day is for you!

Tomorrow afternoon is Danny's first meeting with PT and then Friday at 9am is our next meeting for therapies, that will be with the school system. Not too impressed with the time of the appt as we live about 45 minutes away from the place so I need to definately be on my game with all the treatments, cathing, feeding, meds, dressing, etc to get all of us out the door by 8am. We'll see how that goes, I just don't have the warm fuzzy for them....they have let my son down in SOOOO many ways. I can only hope that I can wipe the slate clean on Friday and they can get their crap together. Put the past behind me, LOL

Friday morning my Aunt is leaving to go back to Wisconsin so the house will be back to "normal" for us. At least after all the hustle and bustle of Friday mornings appt,LOL I am looking into some fun stuff to do around the local area here so we'll get out and do something once in awhile. As Bonnie LOVES to shop so we've been out almost everyday and I know once she leaves things will calm down ALOT! Love her being here but still nice to get back to our routines!

Just got an update from Connie as she is packing up Danny's BFF Griffin to go to the ER, please keep them in your thoughts. Get better Grif!!!!!!

Working Plumbing!

I think I figured out the issues with Danny and his peepee problems. I also realized yesterday that he hadn't had a bowel movement in four days either. So after the babylax enema, some much needed assistance, and three (yes three) diapers later I think he is cleaned out, YAY! Danny even peed twice today all by himself. So I guess constipation and lack of peepee go hand in hand. Poor thing! He even gave me a few smiles today.
Today after her school work was done, Avrianna hung out by the pool with Aunt Bonnie and Grandma/pa Kohl. While Dan, Danny and myself ran some errands. Tomorrow is going to be Danny and my day to sit and relax by the pool too as we haven't been able to get to the pool yet.
Unfortunately once AGAIN the Lee County School system has failed my son! I really had high hopes for them but nope.......they knew I was coming here over a month ago and they just now scheduled an IEP update for Nov 14th. WTF!! So by the time they get to the meeting and start scheduling something for him Thanksgiving break will be here and then we leave. ARGH! I am going to start calling around for at least a PT tomorrow. I'm sure the Children's Hospital that I took Avrianna to this spring would have therapist there or at least a lead to someone. I wanted to really work out and stretch lil man before surgery so I am going to have to step up to the plate even more if I can't find anyone....or he'll have to bring his WI therapist with us when we come down here, heehee.
Tomorrow night we will have to watch the election to see how it turns out. I'm not big on politics but like to see how it ends. My opinion is they all lie and cheat just to get the votes they want then they don't follow through. It is what it is and we'll have to deal with the outcome....which ever one is elected they alot of work to do and alot eyes on them.

Shots, shots, and more shots

Yesterday's ultra sound went well. Avrianna was excited to be able to see her insides on the screen. I haven't heard as of yet how everything (liver, gall bladder, and spleen) looked but I'm pretty sure they are all alittle "off".
We came home after wards and ate a big breakfast with bacon and eggs that Dan had made for us and then completed her school work. After that Danny had speech here at the house and he did very well with them. Then off to the hospital to have PT. He did pretty well with that too. Ms Tina is trying to get him to sit straighter/more upright in his chair and he doesn't due so hot with that. I'm sure it is very discomforting with his puck getting caught up in his ribs and sitting on his hip but he will tolerate it for alittle while. His poor little face just says it all, he goes from flushed and warm to VERY pale white and cold. You have to really be watching him when he is sitting up wards as his blood pressure jumps all over the board. I see her point in getting him to sit up but really don't think it is going to be a real option as least for a LONG while.
This morning the kids and I went to see Dr Kasper for Ms Avrianna's annual physical. She is squared....45lbs and 45" high. Everything is good with her. She is very excited that she won't have to do many blood draws after the surgery. That is a BIG plus in her book. But due to having the surgery soon she needed some vaccinations today and that wasn't very high on her list today. I still think my ears are ringing, LOL. It took myself, Dr K, and the nurse to hold her down. What a strong lil thing when the anxiety kicks in. She is now vaccinated for the pnuemovax, meningitis, and the flu. She's NOT a happy camper at all. It did make her feel alittle better when she knew her brother was getting the flu and pnuemovax and I was getting the flu too but not enough for her to crack a smile. Tonight she has Pioneer's so that should get her mind off the shots.
Well off to finish her schooling. Take care!

Busy, Busy

I guess I am going to make up for tomorrow, LOL. Avrianna and I have to be at the hospital by 7:30am for her ultrasound on her gall bladder and spleen. The doctors want one done before they remove them, not sure why, but whatever. Avrianna is anxious as she knows she can't eat or drink ANYTHING now till after the ultrasound. So Dan told her he was going to have a big breakfast spread waiting for her when we get home. So the boys are going to get ready for the day by themselves...oh no watch out for the flannels, heehee.
After that Danny has speech at the house from 2:15-3:15 and then Physical therapy at the hospital from 4-5. Danny will be wiped by dinner that's for sure. Don't forget getting Avrianna's schooling done in there. She is doing SOOOO well with the 1st grade curriculum. I'm so proud of her, I think at the rate she is going she'll be starting some 2nd grade "fun" stuff before the spring starts. Then we are meeting a good family friend out for dinner at Hu Hot....MMMMMMMMMMMMMM.
Well probably won't get a chance to post tomorrow, but you never know!
Found this on another kiddos site and just LOVE it.... Don't count the days, make the days COUNT!
Take care

UGH!

Well yet another thing to add to the Osero family plate. The dog! Her lymes disease is acting up again so Bailey is back on her lyme medicine. Yeah a dog with Lymes, allergies and chronic ear infections but...... she's my baby. She turned 8 in September. This year she has defeinatly slowing down and she is getting so white on her face.
With us going to Florida I will need to keep her on the flea/tick stuff and heartworm pills all year long. While we were at the vets today they cleaned her ears, she got all her shots, and I had them cut her nails. She's all ready to go, she loves it down in the sunny state too.
MY babies!!





Today they called and comfirmed both surgeries on the 2nd of Jan. I'm feeling better today about it. Aniexty!!!!! I did tell Avrianna, as she heard the message on the machine, that she is also going to have surgery with her brother (THE SAME TIME & DAY) and she did VERY WELL! I'm leaving it alone. I told her and I'm very surprise with the good reaction so I'm not going to rock the boat.
Yesterday Ms Kristi (OT) came out and made a lamb out of cotton balls with Danny and he didn't seem to impressed with it. He had this face on him that something was wrong. So I got him out of his stander and Ms Kristi played with him on the floor and sang him songs. I did show her the video I made of him after his shower yesterday...he was having a blast talking up and storm and swinging his arms around. Something got him excited and I was actually able to catch it on video. If I can figure out how to get it on the computer I will share, but I'm not very computer savy (my neighbor might have to help me out on this one so bare with me, LOL). I'm so happy I was able to get it on video it's so AWESOME. Today Mr Dan (PT) is coming out to play with him. He is in a good mood now so hopefully he will want to play with Mr Dan alittle later.
Well off to clean out the basement. Have a good Friday!

What a Day!

Ok my day started off pretty relaxed as I has anticipated the day to get "busy" in the afternoon. It definitely did not go as planned but still was very productive. After I showered and got the kids out of the bath I planned on making some phone calls and emails while we were doing school today.
I received an email this morning stating that Avrianna's lab from last week did indeed show antibodies for the Parvo/fifth disease so that means her Aplastic Anemic Crash was due to that bug. We now don't have to worry about her ever getting it as she already got it, that is a big relief. I then called central scheduling to make a consult appt with the surgeon that would be doing Avrianna's gall bladder and spleen removal. I sat on constant ignore (hold) for ever and then the nurse came back on stating:

Nurse -- I see you live in Neenah
Me -- Yes I do
Nurse -- well I just called the Fox Valley Children's Hospital where Dr. Oldham is doing clinic right now, he said he would wait for you if you could get there in the next 15 minutes
Me-- Are you serious, please tell him we WILL be there

Ok when does that ever happen....getting into not only see a specialist the same day but a surgeon. WOW! He was very nice and answered some of the questions I still had for both procedures. I feel alittle better not only with her surgeries but with some of Dan's issues too. Some of you may know but the blood disorder that Avrianna has was inherited from her father. He had a more severe case when he was an infant but with his surgery happening years ago and him not wanting to go into a doctor when he should I got some of those questions answered too. She needs to get some additional immunizations done which are scheduled for next week and then they are requesting another ultrasound of her abdomen (also being done next week) before the surgery. I will be calling in the next few days to see when we can schedule both the gall bladder and probably a complete spleen removal. If they are both done as complete organ removals it can be done laproscopically ie: less scaring, less recovery, but alittle longer procedure time, and higher chance of post spleenectomy spesis (so I will be doing some more research and talking more to Dr Kasper before I TOTALLY make up my mind).
After that appt since we were already at Theda Clark I went up to Rehab to see if they could get Danny in earlier for PT so we didn't have to come back. Again wow, they could get him in. Then realizing I would be late to get back home for speech therapy through the school I called them and asked if we could due a field trip to the school for therapy today as it is right down the street from Theda. They said that would be great! Mr. Scott and Ms Maria sang him songs and helped Danny paint his own paper apple. Danny was very interested in what they were doing and it was great to see Danny's eyes follow what they were doing. Make me wonder how much he can REALLY see. It was fun! WOW - now we are batting 3 for 3 that normally doesn't happen to me, if one thing in the day gets off then it's a snow ball running down hill, but NOT today.
Just as that was getting over with I received a call from Danny's Respiratory therapist that the cough assist is in and he would like to drop it off, GREAT! I'm on the way home. I just had to stop in and get my new glasses and I then I would him at the house. Another big piece of equipment but if it helps. I didn't see any discomfort from Danny when we tried it out on him but again I didn't see it helping him cough either. So we'll see.Danny is doing well....I think all of the junk is stemming from allergies as he doesn't act like he has a cold. I think he just accummulates all his sucretions and then when he gets over loaded he doesn't know what to do with it. Most of today he was prefect. It's probably because we got this new machine here and he knows it so he's going to be on his best behavior, what a stinker, but if just having it my house wards off all evil (quote Dr. K) then let it be. LOL
I also called and Danny's new wheelchair and floor sitter are in, except for the head rest. Once all the pieces are in Mike will bring them out and Danny will be riding around in his new wheels, Yay! I'm so excited as the old chair just isn't doing what it should anymore. I will take pictures of him in his new wheels.
Unfortunately with the unplanned hectic day I was unable to go out and watch the blasting for the basement, but it was a very productive day and it amazingly went VERY smoothly. So we stopped at the golden arches for a happy meal for Ms Avrianna, a shake Danny can sneak some tastes, and a mocha coffee for mom and we're going to sit and relax the evening way.
Monday is our first homestudy home visit with the new adoption agency. I am so excited that our adoption journey is starting again and on a good note. Another strange small world thing. This weekend I met a women who comes from the same country and has the same name the lil girl had that we tried adopting this spring. Just made me think about her again!
I hope all is well with you. Take care!

Busy, Busy

Well do to Danny's crappy sounding chest yesterday morning I canceled his water therapy. He loves being in the water so felt bad that he didn't get to go. The cough assist machine needed to be ordered as they didn't have one in the warehouse so it should be here some time today. Still no fever yet so we are doing well with that. His stats are up then down throughout the day but did well on just the bipap last night so I didn't need to bleed in any oxygen. We did Mr. Jiggles alot yesterday and will continue to do so today. With him not having a fever and being able to maintain his stats I'll have speech come over today as scheduled and I'll see how that goes to see if I bring him to PT after that.
Ms Avrianna is one tooth less this morning. She lost one of her bottom teeth yesterday was up early with excitement to see what the tooth fairy brought her. WOW! I remember only getting a quarter and that was for the bigger teeth, economy, LOL.
Today is the "BIG" blast for the basement of the new house so I am going to try and get there and take some pictures. Something you don't see everyday and it will be fun to be able to say I got to see them blast. Not sure when they are going to do it so hoping I will be able to get there as Dan left this morning for a week up North to the shack so with our daily schedule, Danny being off, and not knowing exactly when it's going to happen I hope things coordinate well.
My new glasses came in so I need to get over there and pick them up also. Never gets boring around here let me tell you.
I've been doing alot of research and talking in depth with Dr Kasper on Avrianna's possible surgeries to see what is the best route to go. I haven't made any definite decisions yet, but I think I'm getting closer. With me homeschooling her she has a better chance of NOT getting the bugs and virus' that lurk the schools. I'm so VERY happy I elected to homeschool her.

Innocence of children

As I got my lil man ready for a big day shopping with us girls...Avrianna turns to me and asks if Danny will be walking when he becomes a dad. WOW! Totally hit me off guard and where does this stuff come from. I know this is a first for you all but I was speechless...dumbfounded you could say. I had to turn away and just about cry.. not only will my lil man not walk but he'll never be a dad, wow that just hurts.
Well I picked up my heart and decided to keep on keeping on.
We did end up going to a bunch of rummage sales around the area and even found a few things for Danny. I got the cutest Halloween costume for him, I can't wait! Talk about a gourgeous day to go rummage sale shopping. The sun was shining and there was nice breeze....just a great fall day. My neighbor came with us and then took us out for chinese at lunch for my birthday. Thanks! :) As we were unloading the van when we got home Danny's PT, Mr Dan (yeap another Dan), just about followed us in. So Danny got stretched out and even rolled from both of his sides onto his back multiple time, Yay! Danny was really having a FUN time today with therapy. We altered his AFO's in hopes that Danny won't clench his lil toes so hard when in the stander. When I get him out the bottoms of his toes are so red and irritated from the clenching down. Well I hope the added padding Mr Dan put in will help. Avrianna enjoyed trying to steal the attention and gave us all a fashion show (instead of doing school work) with the dresses we bought for her today, poor Mr Dan, lol. We will be seeing Mr Dan two times a week now as on Monday Danny starts his water therapy again, so watch out life guards my lil stud muffin is coming and he still has a tan, woohoo! LOL
Cute, small world story: My mom was out to dinner tonight when her husband was introducing her to an aquaintence of his. Some how they got on the subject of Make A Wish as the couple does alot for them because their daughter passed away 2 years ago due to a rapid cancer. Well they were going on about Danny and his bed that he got from MAW and that Avrianna is awaiting her wish. My mom was talking about how great I am with the kids and some other things when the lady turns to my mom and asks with a strange face what our last name is....she told her....and the women with excitement I guess says I KNOW HER. She was one of the women at the eye clinic yesterday that helped us out...how funny is that. Well then I guess they went into more detail, oh boy, but long story short I guess I made an impression on the woman. They parted their ways and ate dinner...then later on the women came over to my mom gave her a big hug and told her to give that to me as she said she was so impressed with the me and how I handle the kids. She was so touched on how she could see how much Avrianna loved her brother and that my attitude towards things is so positive(boy do I have them all fooled,lol). Well it made me feel good to hear that!
Just to fill you in our CB friend Matt is doing better, he's stable now and hoping to get out of PICU and on the general floor soon. He has an aspirated pnuemonia and GI problems. This is September kiddos.....everyone is getting sick so early this year. I'm scared to death what this fall and winter are going to be like, YIKES!
Unfortunatly I was unable to put Cole's site on here sooner as he is a lil boy I just started to follow. This afternoon he earned his angel wings so please go onto his cb site and leave some words of comfort for his family today who I know are having to endure one of life's hardest journeys....the lose of a child!
http://www.caringbridge.org/visit/coleruotsala
I hope the start of the school year is going smoothly for you and that you are staying HEALTHY! Life life for today as you can not change tomorrow and you never know what tomorrow is going to bring. I am so trying to live by these words! Have a good one!

Just Another Day

*****SCROLL DOWN TO THE BOTTOM OF THIS POST FOR BLUE ROSES!!******

First - please stop in at Matt's site (our CB friend - link to the left) as he awoke this morning very sick and needed to be admitted to the PICU. The parents could use some comforting words right now.

Well today started so so...I had seen a post on another site that makes total sense to me today. Live life in the present, as the past and future both can be sad and frightening. I so understand that! Today I tried to reflect on my life and found myself in tears seeing the what if's and could haves when all I needed to do is look at what's right in front of me....the best kids/miracles a mother could have! They are what makes my life "worth" it. I was one that dreamed of a family from when I can start to remember and now I have TWO. How wonderful and I got to spend the day with them, I couldn't have asked for more. I wouldn't be the person I am today without them in my life! They are my EVERYTHING! Dan called and was so apologetic that the day wasn't "special", but any day that I can spend with my kids is special for me.
Today we went to the mall to get my mom's ring (it was being repaired), to get some aromatherapy stuff for the house, and we ate at Subway for lunch. Then we went to go get Avrianna and my eyes checked out. Danny had a blast, I think he was enjoying the idea he was there just for the ride and didn't have to have stuff done to him. Both Avrianna and I had the full treatment with eye dilation and all. My eyes did indeed change for the worse so I'm hoping after getting my new specks my headaches will subside. Avrianna is also entrying the world of GLASSES. She right now is totally excited about them but I'm sure after having to wear them and care for them they are not going to be so neat anymore. I can only wonder if her major medical crisis this spring helped in her need for glasses. In Jan of '08 I took her in for her first exam and she was ok and now she is in need of glasses due to "weak" focus muscles. The doctor mentioned that if she should have another episode she needs to come in earlier but every year should be just fine. So I'm concerned that her blood disorder or the trama her body deals with having it is causing her eyes to become weaker. Her eyes are always yellow do to the jaundice and anemia that her body has on a daily basis so maybe? Of course I didn't wonder this till after we left the office so I will be asking the Pediatrician if their is issues with eye sight and having HS. She picked out pink ones so I will post a picture of her when they come in. She also has two loose teeth! My little girl is growing up, sigh.
After the eye appt we came home and Danny had OT. Today I put him in his stander for his therapy and he was having a good time. Ms Kristi had him paint apples on a tree with an apple stamp. He was smiling and even vocalized for her, WOW, so I think Danny will do better for her in his stander during OT time. After OT the kids and I went to Walmart to do alittle shopping and to just browse around. Avrianna picked out one of those lil cakes for my birthday cake so we went home, put a cande in it, and ate it with just us three....yeap had to give lil man some frosting. Last night I gave him about 7 (of his spoon fulls) of banana pudding and some pumkin ice cream and he did GREAT with that too.
Hope all is well! Live life for today as you can't change yesterday and you never know what tomorrow will bring. I love Blue Roses, they are my favorite flower and happened to come across this so I would like to share.

************************* BLUE ROSES ******************************

Why do I always have to be the one that starts to do laundry and there's no detergent? Well, I guess it was time for me to do my store run, which included light bulbs, paper towels, trash bags and Clorox. So off I go.

I scurried around the store, gathered up my goodies, and headed for the checkout counter only to be blocked in the narrow aisle by a young man that appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged, and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Hal."

"Hal, like Halloween?" he asked.

"Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle. "You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him. I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit.

I told her that there are plenty of red, yellow and pink roses in God's garden, however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a "Blue Rose" and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion but I sure love living in God's garden."

Please the next time you see a BLUE ROSE don't turn your head and walk off, take the time to smile and say Hello. Because by the grace of GOD this mother could be you. This could be your child, grandchild, niece, nephew. What a difference a moment can mean to that person or their family.

From another old dandelion.

Live simply. Love generously. Care deeply. Speak kindly.

Leave the rest to God.

~Author Unknown~

Another Year Older

Well in less then 2 hours I will be another year older. WOW does time fly! I always said that if someone would have told me years ago that this is where I would be at 34 I would have laughed in their face. But today I can say I am a better person! My children have shown me how to become a better wiser and now older woman, LOL. I guess you need to be young and foolish to become older and wiser. Well I will be spending my day with the kids and then possibly a friend and her daughter will come over at night for dinner and a movie here at the house. Avrianna and I have to get our eyes examined and Danny has therapy to.
Yesterday Danny got to meet his new Speech therapist and she seems to be pretty comfortable in working with Danny. I got to pull out some of the stuff I have here at the house that they can work with him on so they have an idea of what they need to bring out if they need it. Danny seemed to be quite engaging with both the Speech therapist and teacher was makes me VERY happy. Today Danny had PT at the hospital and he was surprised as the therapist we has thought he was having was out on leave so he got to play around with the other. He tolerated PT pretty well with his head control and he seems to be interacting more with her. He even sat upright more in his wheelchair for a longer period of time, Yippie! He did have 3 seizure episodes, but nothing to get excited over they were more of a eye tremor thing so I'm hoping it is do to the lack of sleep (as he felt he needed to be up again at 5:30, yikes). Tomorrow is OT here at the house and then PT here at the home on Friday.
Dan is off racing and the only hiccup right now is the difficulty of getting through Chicago as he heard the major Highway is out due to the flooding from Hurricane IKE. I hope he has fun and does well racing as his birthday is on Saturday so he should have a wonderful time spending his day doing what he loves to do!
Avrianna received a phone call from the Make A Wish program yesterday....it looks like she is not going to meet Miley/Hannah Montana as Hannah has "closed" her wishes for this year. She is only seeing 8 more kiddos this year and Avrianna is I think # 16, so she would be able to meet her but it wouldn't be into Spring/Summer of next year. Avrianna has decided to go with her second wish which is to go on a Disney cruise with a princess and be a princess! I think she will have a blast. So we are now back waiting for the paperwork to get processed for the "new" wish. I will keep my eyes open and when Hannah is coming close to town for a concert maybe I can get tickets and back stage tickets.
I hope all is well with you, Take care!

Beauty Sleep

Well my lil man thinks he needs to "party" it up early in the am hours and then sleep when he should be up. Today he slept till 2pm just enough time for me to get him showered before the vision therapist came over, this was her first visit back for the school year and I couldn't let him be the stinky kid, lol. With all those zzzzz's he woke up in a very good mood. He is smiling, vocalizing, and even moving his arms and legs alittle. Of course this is all after I told Deb (vision therapist) that he has lost alot of what he had started to "get" from therapy last school year and the most evident lose is alot of his purposeful movement. Not sure if that is due to the ITB pump or the amount of seizures he has had this summer. I know the biggies can "wipe the slate clean" and he would need to relearn most things. But I will take him proving me wrong when he does all the good stuff! Tomorrow Danny is going to meet his new Speech therapist as she wasn't able to come at last weeks therapy. So it should be interesting to see his reactions as both the teacher and speech therapist tomorrow are new. Danny tends to be on the more reserved side when it comes to new people, again he'll probablyt prove me wrong, but I'm ok with that.
Of course after I took his pictures the other day he was smiling from ear to ear for his dad, ARGH! Well his is handsome either way smiling or not.
It's ours, FINALLY. We closed on the land early this morning. Tomorrow the contractor is going to pull permits and then their off in making our Dream Home come true.
Dan did very well at the races yesterday. They are now racing on Sundays. He is going to Michigan for a big end of the season race this week. So no racing this weekend here, but I think he has one more Sunday left and then racing at WIR is done for season. He will be gone for 5 days racing in Michigan so I hope he does well and has a fun time with some of the other racing guys. I will keep you posted on his results.
Finally the weather has started to cheer up alittle. Thanks to IKE!! Amazing how we here in WI still can get bits and pieces of it's leftovers. Unbelievable how must destruction can occur. This week is suppose to be wonderful weather wise so I'm hoping we can spend most of the days outside enjoying the fall days before the snow comes knowcking on our doors, yuck! Take care

Busy, Busy

Wow I haven't posted in a few days. Well Sunday I realized that this week is the start of our "normal" schedule. Which means I will have someone coming into my home at least once a day to do therapy with Danny or I'm running either kid here or there for other activities. So I got this wild hair up my butt to tear apart the house, clean it, decorate it for the fall, and put it back together. NUTS!!!! Well it got all done Monday night (what a way to spend your anniversary, hu?) It's done and I feel better about having people coming over when the house has had a "BIG" clean. I love this time a year! The weather is cooler and for Danny that's that bomb, plus I have people coming over so I can have some "adult" conversation (I know that are here for Danny, but they are emotional therapy for me as well), and the oven comes out of hibernation and watch out. I love to bake and cook so I'm always doing something in the kitchen not only does it mean nice warm meals but my house smells awesome. Pumpkin cheesecake here I come, heehee! I love this weather!!! Tonight my family is getting together to celebrate the birthdays of September, we did have it planned for Labor Day but schedules didn't allow that to happen. Pizza, beer, and birthday cake, now isn't that any great way to celebrate. Yes in one more week I will be turning another year old, ARGH!
Danny got to meet his new teacher yesterday along with PT Dan. I'm so glad that Dan is back with Therapy as Danny really seems interested when he's around so with the new teacher being a male maybe we will get the same response. I hope! OT is coming out today, swim starts on Monday, and I haven't meet the new speech therapist yet but she and the teacher will be coming out on Tuesdays. PT with Dan is on Fridays and through the hospital I have it once a week when it allows. That's just Danny!! Avrianna and I do school work about 2 hours of sit down a day, then projects, she has swim on Thursdays, and Pioneer Club on Wednesdays. She would like to start dance again but not finding it in the schedule, I'm sure I will make something work.
Next week they start breaking ground on the new house and I can't tell you how excited I am! I will be going out to take pictures of the "land" and then keep going as the project is under way so I have a picture diary of all that is going on. I just got done planning a meet and greet party with all the contractors working on our "Dream" home so I can personally thank them before we get too far into it. I will post pictures so you can see how things are going too.
Please still keep Reese in your thoughts as she is still fighting! Her family is going through a very rough time so stop in their web page (link is on the left) and give them some words of comfort.
To leave comments on their page as well as this one you click on the comment link under each post (as it's alittle different then the CB site we had) So you can post that you stop by in our guestbook on top or reply/comment to each post.
Hope you are all doing well. Take care! Oh yeah go into Danny's equipment link (on the left) I have added new photos of his stuff (bipap, lift, mickey button & pump)

Ok I know I try to be rational on things, but this hip thing is giving me grief. I have all to information on how his hip is effecting him now and how it should effect him after the surgery, but I still can't get myself to pick up the phone and make the date. I guess with the last surgery on his ITB pump it has made me gun shy with all this. That was complete hell for Danny and myself and not to mention to results weren't really what I was anticipating with the added issues that weren't told to us catheter slipping, floating puck, yadda yadda yadda! ARGH. With Danny only have one hip being out it is actually worse then if both were, cuz at least the pelvis would be more leveled out with both out. His being only one he sits "off" causing his back to curve more, and then making it uncomfortable and harder to breath. So theoretically when the surgery is done he should sit straighter being more comfortable and breath better. So what's my problem?????!!! I am going to try and schedule it soon. There are more pros and cons so I just need to bite the bullet and do it. I posted a new picture in the link for Danny and his equipment as today he got freight train leg immobilizers when in PT. He's not too sure about them yet but it makes transitions in and out the stander easier and to stretch out his hamstrings more.
I got some more calls from the school therapists today and the calendar is filling up. So far I have heard from vision, PT, water and OT. So exciting to get them back and then Danny can get a REAL work out. Watch out now Buddy, LOL!
Saturday is our Make A Wish walk/run and I'm so excited to participate in it. We will be accompanied by Danny's BFF Griffin and his family.

It will be good to get together with Connie and her family. This summer has been so NUTS I haven't been able to get out and just hang out with my friends. I'm hoping Danny will corporate enough so we can have a good time. If you haven't yet please support us in our walk to help make children with life threatening disorders have their wish come true. Click on the link to the left, the last days to pledge us is Friday! I will post pictures of us later on Saturday, I hope.

Follow-ups

6:45pm our dear CB friend Lilie Clark at age 22months earned her angel wings and is now healthy and whole with the other angels. Please click on her link to the left to follow her story and keep her family in your thoughts and prayers tonight.

Today Dan, Danny, and I went to Milwaukee to have a chat with one of his doctors in Rehab. Danny hasn't seen him in a long while so I wanted to get him up to speed with all of Danny's issues and get his opinions on them ie: trach, hip, back, ITB pump, and tone issues, yeah I know alot to go over in one visit. But he was wonderful in helping us plan for a quality of life for Danny and to help us help all the doctors work together. So I'm looking onto his shoulders for some coordination and guidance with all of this. He applauded Dan and I with such a good job we do with Danny, so that made me feel good. Then on to the issues at hand as we all know this summer hasn't been an easy one for us. The trach thing is on the back burner right now but he is refering my to some one to get more info on it and how it would effect Danny life if we should choose to go that route. With the Baclofen pump there isn't too much to dwell on with that as even though the neuro surgeon in Milwaukee put it in I have Danny's Neuro doc maintaining it so with all the political crap one doesn't want to step on the others toes. I did voice my opinion on how it was to help Danny's quality of life and for the most part it has but with added issues as the catheter continues to slide down his spine (wasn't anchored properly) so the benefit that Danny was suppose to get from the medicine isn't what/where it's suppose to be and the puck floats (also not properly anchored) so it gets caught up in his ribs or sits on his hip causing pain. We discussed Danny's hip and with further talking about it I think it is important that we get it fixed as soon as possible. Unfortunately it took into the start of the school year for me to figure it out, but with all of the summer's medical surprises I guess I'm glad I didn't do it. So I will be calling soon to get that surgery rescheduled. Right now we are to sit and wait till his back starts to curve more (as it's been stable for 6months now) and it will. Then look into having the VEPTR procedure done. WOW that's alot to take in on one visit, but came out informed and READY to take on what comes our way. It's nice to know that now when I'm down in Milwaukee I have someone to lean on the is watching our backs and has the WHOLE picture in mind with Danny so he can be the "coach" if you will to all the other team members.
Today I started getting calls from the school therapist so I'm so excited to get them over and Danny back in the routine. WELCOME BACK!!!
Don't forget Friday is the last day to support The Osero's in the Make A Wish walk/Run so please pledge us. You can help make a difference in a child's life. Give them the opportunity to make their wish come true. Thanks for helping out in such a wonderful cause. Click on the link to the left and that will get you to our team page and you donate online.