The Big Foot Walk

When we got to the park the clouds were out and it was VERY windy.  So we were freezing, within a half an hour or so it warmed up but boy the wind didn't let up one bit. Danny had some issues with the wind, but alil more venting and he was a trooper for his sisters program.  I know Danny is so proud of his sister....she is go good with him.  I'm one PROUD mom of BOTH my kids!  The Osero kids ~ our Team name Touched By An Angel ~ won a door prize because we were the highest pledged walkers today!  THANK YOU to everyone that pledged ..... what a wonderful program.  Avrianna was just tickled pink to not only show off her brother but to go up and accept the prize.  Thanks again ~ if you didn't pledge but still wanted to... they stated they are going to keep the fundraising page open for a few more weeks.  To pledge click HERE

Walking hand in hand ~ both VERY Proud to be each other! (lil tricky getting this picture by ourselves, they were going down hill, LOL)

Harriett Redman and her son, Phillip....Founder & President of the wonderful program Fox Valley Sibling Support Network.  Thank you Harriett for giving the siblings a place go and feel "normal".  What a great program!!They had games!

Better in the front seat then the back, right? heeheeThey has some therapy dogs....this one is Poppet what a GREAT dog.  I got some information from Poppets mom about the Therapy Dog program here in the Valley =)Avrianna found a new friend.....And Poppet found Danny ~ SMILES!!!!  Danny was so into Poppet...he kept turning his head to look at him (which by the way meant he has to turn his head to the left, Way to GO Danny!)  I hope to get a companion/therapy dog for Danny.  A small one that can be with Danny on his lap or/and in his bed.. a buddy that Danny can rely on :0)

Avrianna got her face painted

The TWO BEST KIDS I could ever wish for ~  I LOVE YOU GUYS!Just a quick update on the MRI status.  I did get Danny's images burned on a disk that also had the radiologists report on it.  I don't have a clue what the images mean to me yet, but the 2 paragraph report states that he has SEVERE BRAIN DAMAGE due to an earlier injury.  No doubt!  I'm glad there hasn't been any change or any new findings with Danny, but now I'm very interested to sit down and go over the images with the doctor so they can tell me what's what.

I got my MRI done yesterday and they also gave me a disk with my images on it.....again Greek to me.  The report wasn't on there, but I did get the radiologist report last night via online.  They found multiple abnormalities in my brain and neck area so I am going to have another MRI this time with a contrast and they are going to do more area.  I have all the terminology of what they found, but again GREEK to me with most of it.  So much for the "pinched nerve" looks like this is REALLY involved.  I kind of knew it wasn't good when my report was longer then Danny's, LOL.   I really don't have too many answers yet so I can't really say much.  I haven't even spoken to a doctor about the report ... just talked to the nurse stating they are going to call me on Monday to schedule ANOTHER MRI soon.  I will keep you all posted with this.  NEVER A DULL MOMENT....just when I think life is going well.  Oh well ~ It is what it is, I won't be able to change it, I'll get through this too =)  I just pray and hope I can still care for my kids .... that's what scares me the most.

Here's a picture of Danny and his therapist during his Physical therapy yesterday.   SO BIG!  He did great.  Today he had PT and OT tag team him and he did awesome again.  Of course he was showing off today as this was his last therapy session of the school year, LOL

A Preview of just some of the paint colors in the house....and they started the stone on the fireplace today too

 

Nanny Checking out Avrianna's room ~ I know check out that color, WOW

Looking into the dining room ~ the stain is starting to go on the windows and the doors too :)

Guest bedroom on Main floor ~ Calily Room

Front of House
Backyard and Pool

Tomorrow I go in for my MRI.....glad that we'll be able to get a better feel of what's going on with this "pinched nerve".  I hope I will get some answers soon.

This weekend on Saturday the kids and I are going to do the fundrasing walk for Fox Valley Sibling Support Network and we are excited.  Dan is throwing a bachelor party for his best bud Tim with a few of their close friends.  I hope they have a blast!!!  We're so happy Tim and Amanda found eachother =)

New Family Members

Avrianna in her glory ~ she finally got a Hampster...shhhhh don't tell Dad, heehee.   She named her Rhinoe (pop quiz ~ anyone tell me what movie that is from?)  Leave it to my daughter to pick out the one that doesn't look like all the others.  She got a short hair Teddy Bear Hampster and yes it's an albino.  Avrianna is so excited!!
Rhinoe seems to be liking her new home, so far......as long as Bailey doesn't introduce herself, heehee


She is already eating ..... that's a good sign, right?
And also ......... two fish.  The little one is Felicia and the big one is Penny.  
Here they are smiling for the camera, LOL.   They are trying to figure out why the floatie fish in the tank are not moving, heehee.  Cheap entertainment!

School Days

Today Danny had his last day of Speech for the school year.....I can't believe that next year my lil man is going to be in Kindergarten.  He got to show off the new proximity switch that he is going to use over the summer.  I am SO EXCITED with the results already!  Danny is showing off his stuff with this new switch, I believe this is FINALLY the one, YIPPEE.  Now it's up to me to find the most consistent spot to put it, but in just one afternoon I've found two VERY CONSISTENT areas where Danny activated his toy.  I even have Ms Maria and Mr Scott as witnesses so I have proof, heehee, I'm not just a nut job mom who thinks her son is doing it, LOL.  Danny sat up in his floor sitter chair for over on hour, engaged in play time (aka therapy time) the whole time and didn't shut down once.  This is good news....watch out you therapists, next year he is going to be a whole new boy with this new switch, more positioning tools, new computer software for him and a new house to spread his wings :)

We also discussed the IEP that we had last Thursday.  I think it went VERY well!  Everyone is playing together to make a team effort in what it best for Danny, I believe we had 15 people at the meeting.  I'm so blessed to have a wonderful team that wants to help me maintain a qualify of life for my lil man.   Next year as I said he will be a Kindergartner, but he still will be home bound with his therapies.  I just don't feel it's worth the risk of him getting sick.  Danny gets sick so easy and then it's so hard for him to recover with hopes that he hasn't lost any of what he has gained.  Plus the one on one he gets at home with us I believe is better for him then being in a class full of kids which most have alot more abilities then Danny.  I don't see it being fair, healthy, or functional to Danny being in the classroom all the time.  I did say that I would love to bring him into the classroom (when the chances of him getting sick aren't so high) when they are having something special going on or during music class and we would love to tag along on some of the field trips.  That way both Danny and the other kids can interact together.  Unfortunately the school district we will be in at the new house won't be able to accommodate Danny's needs so he will be registered within a different district.  I know for sure he will have a new teacher for the school year (a kindergarten teacher that will be doing home bound education), but the therapist ie: Speech, OT, and PT I'm not sure if they will stay the same.  I hope so ~ but will be prepared for new ones if they need to change.  I can't wait for next year....I have all these great things to use and try over the summer, plus being in the new house next year.......well SKY is the limit for Danny and Avrianna for that matter.  

Avrianna was feeling much better around 5pm yesterday.  Thanks goodness!  I was really getting worried, as she wasn't keeping anything down ~ not even ice chips.  I called nurse direct and they said if she continued to not keep anything down for over 8 hours to bring her into ER and have her checked out.  Good thing she started to turn around by 5 cuz that was her deadline.  Today she is back to herself again :)  We are wrapping up her 1st grade school year also.  Then onto 2nd grade in a couple weeks....WOOHOO!!

I scheduled Danny's cystoscope (scoped surgery for his mass that they found in his left kidney) for July 6th.  He will be admitted for 23 hours afterwards for the minimum.  Of course I made a date with just my husband and I to go see Sugarland in concert on July 8th so something tells me, Danny might put a wrench in my plans it ALWAYS happens like this.  Oh well!!   I hope to hear back from Danny's MRI next week sometime from his Neurologist.  Dr Kasper is going to order a copy of the images on disk so we can see them too :)

This week we are finally going to get started with PT at the hospital for summer therapy (someone was sick every time he was scheduled the last few weeks) and then Danny has one last OT session this week for the school and she will be done for summer too.

Please don't forget to pledge your donations and sponsor us in The Big Foot walk it's this Saturday May 30th.  Click on the box to the left. 

Thanks for checking in on us ~  Please leave a comment or sign our guestbook, we'd love to hear from you too :)

Danny's "Rap" Sheet

This is Part of the spreadsheet I made for Danny....I have a copy of this with us at all times and update it all the time. That way I don't have to repeat myself at appt or forget something! Doctors really appreciate this :)

To Daniel James Osero Updated

9-14 D.O.B 12-23-03 Weight: 66lbs Height: 51in Head 45cm

Diagnosis:

Hypoxic Ischemic Encephalopathy ~ Severe Spastic Quad CP ~ Seizures ~ Laryngeal & Tracheal & Left Bronceal malacia ~ Kyphoscolosis ~ COPD & Sleep Apnea ~ Cortical vision impairment & Optical atrophy ~ Clonise ~ Hydronefrosis kidneys & Calcium deposit ~ C Diff ~ Precocious Puberty ~ Renal Tubular Acidosis ~ Lupus Anticoagutant ~ Dysautomonia~Tracheotomy & Ventilator Dependent ~ Torticollis ~ SMA syndrome ~ SIADH ~ Right Hanging Hip ~ Both Ear Perforated  ~ Wheelchair Bound ~ Urinary retention

Med Port access

Feedings G-tube ONLY Neocate Jr 

Surgeries: 30+ in all here are just a few
G-tube placement 2-04 & 7-04 ~ GJ tube placement 6-04 ~ Fundaplication/Nissen 7-04& Pyloric value opening 7-04 ~Bronc 11-04 & 10-06 & 11-07 ~ Suprogtolloplyasty 11-04 ~ Bilmyringtomy & Ear Tubes 11-04 & Ear Perforation ~ Baclofen Pump Placement 11-06 & replacement ~ Right Hip Ostiotomy 12-08 ~ Pick line 7-09 & 7-10 ~ Tracheostomy 07-09 ~ VETPR 7-10 ~ Girdlestone ~ Full Back Fusion ~ Med Port placement

Doctors:
Dr. William Kasper -Affinity Neenah

Palliative ~ Dr John Humphrey
Nero Dr. Edgar-Prevea
GI Dr. Miranda-CHOW
ENT Dr. Martin-CHOW
Eye - Affinity Menasha
Pulminary Dr. Lynn D’Andre-CHOW
Dentist - CHOW
Orthopedics Dr. Tassone-CHOW
Urology Dr. Durkee - CHOW
Endocrinology –CHOW

Cardiology ~ CHOW FV
Hemotologist Dr. Scott –CHOW Bleeding disorder nurse – Jodi Haar
PT 1 every other week 

The Big Foot Walk ~ 2nd post today

Just reminder....the kids and I are in doing a fundraiser walk this Saturday May 30th. The funds will go towards the Fox Valley Sibling Support Network. A wonderful program designed for the siblings of special needs children. To learn more about the program please click HERE.

If interested please pledge your dontations in box to the left or click HERE!

Memorial Day

It must be a holiday weekend!!!!!!!

What a way to wake up in the morning.....to a puking child *sigh*. Avrianna finally just took a nap. She's been up puking every 15-20 minutes for the last 4 hours. The poor thing! I feel helpless ~ she isn't keeping ANYTHING down. I try and remember what my mom did that made me feel better when I was sick......so we have the couch set up as a bed, with a bucket, some saltine cracker, Sprite, and movies. I was able to give her a shower in between her getting sick, changed her jammies, and brushed her hair putting in some barrettes to help hold her hair back. You can just see it in her eyes that she feels miserable and weak.

Danny has decided once again to NOT wake up. I had him outside in his swing yesterday for a couple hours and I'm chalking the fresh air up to the reason why he won't show me his Handsome blue eyes. He fell asleep around 6pm last night and it's 12:15 now. At best he was up for an hour this morning.

Last night Dan and I had some friends over for Smoked Turkey and a pot luck. What a nice time that was ~ You guys are great! HAPPY BIRTHDAY PATTI!! Today is Patti's birthday and next week is Allen's so I decorated a cake for them :) Something simple, but I had fun doing it. Here is the Birthday couple....he is the local farmer so I tried to do a John Deere Tracker for him and she has a BEAUTIFUL garden hence the flowers. Hope you two have Birthdays!Other fun pictures of the evening on the deck :) Thanks guys...it was a great time, we'll have to do it again soon!

Enjoying the day outside, YIPPEE!Cuz "I SAID SO".... Danny listening to his girlfriend Lynn, LOL

Hope you all have a SAFE and HAPPY MEMORIAL DAY! Please remember the real reason for the holiday (not just a long weekend) but remember our FALLEN HERO'S. Your FREEDOM didn't come FREE....it has the ultimate cost......LIFE to many hero's! Thank you to our American Soldiers for all that you do.

Productive Whirl Wind Day!

HOLY COW was today busy, but it went smoothly. This morning Danny and I went on our way to the hospital for his Renal ultra sound and afterwards to see his urologist to talk about how he has been and go over the results of the u/s. Of course they like to see the bladder full for this test..........and he peed right when she squirted the jelly on his belly, Oh well :) Once I got up to the doc appt they stated they needed a urine sample........well that would have been good info to know a few minutes AGO, sorry :) The doc came in and stated the "bubble" in his left kidney last year isn't a "bubble" anymore.....so he sent me down to x-ray. Danny had his MRI scheduled for today too so I needed to put the x-ray on hold to do the MRI (which he did AWESOME). I had given him his sleeping medicine (instead of sedating him) so I wanted to take advantage of the "heavy eyes". Unfortunately after the MRI was already in process I find out that no one made sure the Medtronic (ITB pump) rep was there to monitor it. UGH!!!!!!!! They did get ahold of him..........IN GREEN BAY 40minutes away and IN SURGERY! But he reassured me he would see Danny before the end of the day (which I was told wasn't a bad time frame, sigh). I should hear from Danny's Neurologist in 7-10 days with the report. I am very excited but very anxious about the results of really HOW MUCH BRAIN DAMAGE MY SON HAS. It'll be all good, I'm sure of it :) After the MRI they wheeled him across the hall and did his x-ray of his kidney. Then we went back upstairs to go over those and to hopefully be able to obtain a urine specimen, LOL. Well the X-ray didn't show any signs of this "mass" in his kidney......so why don't I go down AGAIN to have a CT done. We were able to get a urine specimen to be tested and cultured, YAY, but not without peeing around the catheter, heehee. I guess he told her where she should stick it, LOL. So down to get the CT scan ~ Yes I couldn't believe it either all were able to get Danny in right away, like that EVER happens. The CT does in fact so the mass, but not in the solid form that he had thought....the doctor was thinking a BIG stone, but this is "mooshie" (like my terminology) and in a "pocket"plus his kidney has significant calcium deposits. Now we have to schedule a scope surgery so the doctor can go in and find out what this mass is. YIKES! "On a good note", the doctor says I get to see more of him......we have a comedian here, LOL. He's a great doctor but really don't want to be seeing more of him :( But will do what we have to do. Then the urine tests came back...his PH levels are WAY TOO HIGH. He believes the PH level and possibly the mass is all due Topamax (which is one of Danny's seizure meds) so here we go again....waying which one is more important? I have a call into Dr Kasper to go over today's knowledge and get his opinions. Plus the Urologist is sending a complete report to Dr Kasper and Danny's Neurologist.
With 15 minutes to spare Danny and I hopped in the van drove across town and went to my physical, oh yay! She says I look GREAT! She is alil concerned about the headaches and the tingling/numbing in my legs also so I have an MRI for myself a week from today. And because I didn't have time to eat breakfast or lunch today I was able to do all my blood work instead of having to come back....BONUS! I'm not too worried about the MRI....it is what it is, my kids have shown me to NOT get uptight about the medical stuff. And we'll deal with whatever path life takes us/me......I look at my lil man and know there is NOTHING I CAN COMPLAIN ABOUT, if I have to go on with alil of what he is living so be it!
As I was pulling into the driveway home there was a man wearing scrubs in my driveway.....yeap they pump guy came to our house. HOLY CRAP! He was so very nice.....he even set off the alarms so I would know what each one sounded like...non emergency and emergency. The pump did in fact shut down when Danny was in the MRI.....but it reset itself about an hour after the MRI, whew that was good. Thanks for coming out for a house call!
Dan is off racing tomorrow so if you got nothing to due....stop on down to WIR in Kaukauna, and check it out. They have show with wheelstanders and possibly some JET cars (my personal fav).
Our walk is on May 30th so ~ Please pledge your donations by clicking on the box to the left in our blog for Firstgivings and sponsor us on our walk for the Fox Valley Sibling Support Network fundraising walk. To read more on the FVSSN
Thanks for checking in on us!

Here we Go again!

I think I finally got a handle on "The Crud" in the house. I am feeling much better, but I sound worse. I'm very nasally and have a deep chest cough that's bringing junk out (better out then in, ey). Danny is congested still but I haven't seen any other symptoms like I had, THANK GOD! Yesterday I decided to strip the beds, scoured all the bathrooms, opened the windows and did a clean over of the house. GET THE CRUD OUT!! I believe I am on the right road to getting myself 100% and Danny well too. He is always congested so I'm just thankful he didn't get the full blown "CRUD" like I did, I just have to suction him alil more.
Avrianna was a HUGE help to me while I was ill. She's such a good girl! We are finishing up the 1st grade and I am ordering the 2nd grade bookwork so she can get started on that in July. We do school work through the whole year. Right now we are finishing up a book called America My World and Avrianna is so excited about that subject (much to my surprise as this was not one of my favs). With Memorial Day around the corner we are doing alot of projects geared around America and our fallen hero's :) In the next 2 weeks we start her busy summer schedule running her here and there everyday for camps. She is in chef camp, insect camp, discovery camp,and art in the park all through the Town of Menasha Park n Rec. This is her "socializing" school time so I try to get her out and around in community projects as much as possible, which makes our summer schedule even more NUTS then during the school year, but she is worth it! Avrianna is so excited for summer camps.
I went to my Chiropractic appt on Monday for the "pinched nerve" in my back/neck which is causing my rear and back of my legs to tingle/go numb when I drop my head forward. They were very nice there and what an experience to hear all the "cracking" going on. After about 1.5 hours of exam and the adjustments the doctor stated how WONDERFUL my neck and back looked. He was pleasantly surprised, with all the lifting I do, on how GREAT my back and neck looks. There wasn't anything really wrong with either my back or neck....he didn't think he could do anything for me as nothing was wrong with the structure part of me,
BUT.................. wait for it, sit down...........
I may have the onset of a neurological disease so he was going to refer me to a Neuro for further testing. At first I was sure it was a back thing and wanted him to do a couple more adjustments and see if I feel better or if it goes away, then the more I thought about it maybe I should set an appt for further testing. I'm in no rush to get the testing done. I'm totally backwards in the diagnosis faze with myself then how I act with the kids but it is what it is and I'll deal with just like everything else. I ironically have a physical with my primary on Friday so I called her to let her know what the Chiropractor thinks I might have and she was going to run some more tests on Friday when I'm there. I was able to schedule an appt with a Neuro but it's a month out....but again I'm in no rush :). Just when I get "My New Dreams" in place then WHAM the wind has been blown out of my sails once again....here we go, life as I knew it might be OVER AGAIN. Can't even blame the kids on this one, LOL. It's all me......why! So much for thinking it was just a "pinched nerve", guess I would have rather been dealing with that then the blow I was hit with. I'll keep you all posted with what's going on when I know more.

Sharing *sigh*

I'm so very upset! I believe Danny is now sick. He woke up from his nap today very whiney and congested and hasn't been able to clear his secretions well. I will keep you all posted, but looks like mom shared *sigh*. I'm going to try and catch some shut eye and hope that tomorrow morning he will be better.

This morning was, I hope, the worst I'm going to feel....I swear I was hit by a truck. My head is going to explode, I can't breath do to my stuffy nose and tight chest and I just can't warm up. I decided to make a pot of HOMEMADE chicken noodle soup to help "the Crud" along. That's the one thing I didn't lose with all this crappy feeling is my appetite. I mean I am eating EVERYTHING in sight! I really am not looking forward to getting on the scale after this sickness, usually I lose weight, but I'm sure NOT this time. Dan brought home Mary's chicken dumpl'n soup for dinner last night and then my girlfriend brought over 2 pints of ice cream (thanks alot Stephanie) which was great but now I'm sure I'm going to have to work if off. There is no will power when I comes to ice cream with a soar throat, LOL
Today I gave Danny a hair cut, finally! He's a new man, whoo hoo. Watch out girls, here comes Mr. Charming :) I feel even more terrible when I'm sick like this as poor lil man just lays in bed. I'm keeping my distance! Good thing his bed is in the living room still, but I hate that he is hanging out by himself today :( Avrianna has crawled up in his bed here and there to bother him and keep him company.
Dan is off racing today at WIR in Kaukauna for the first time this year...yeap even in this 30 mph winds and chilly temps. This morning I believe it was 35 degrees here, you heard me 35! I swear next spring we are not coming home till June from Florida. This SUCKS we would MUCH rather be pool side!!
Well here's to another lazy day....wishing lazy days didn't consist of me being sick, sigh. I'm going to try and take a nap....very weak and lazy right now.
Our walk is on May 30th so ~ Please pledge your donations by clicking on the box to the left in our blog for Firstgivings and sponsor us on our walk for the Fox Valley Sibling Support Network fundraising walk. To read more on the FVSSN
Thanks for checking in on us!

"The Crud"

Last night during Grey's (which had a GREAT ending to the season) I got a soar throat...no warning just WHAM, then the chills, and this morning I'm a mess. My body aches! I cancelled my plasma donation for today, last night when I went to bed as I didn't think this was going to go away over night, sigh. So much for Danny therapies today either.... FREE day, as mom is sick. Poor thing ~ I hate it when I'm like this because I am going to limit the contact with Danny today :( . I don't want to get the therapist or Danny sick so I'm going to keep my distance with lil man and cancel therapy today. What a way to start the weekend, NOT! Next week we have therapy full force....We are going back to swim therapy, and out patient therapy on top of the normal home bound PT, OT, and Speech for the week. Plus next week Danny and I have his 3rd IEP in 6 months, UGH ~ one in December for WI, one in March for FL, and this Thursday's is to get his kindergarten goals in play in WI. OMG I said kindergarten...can't believe my baby is going to be in kindergarten, WOW. This Friday (a week from today) Danny is scheduled for a renal ultrasound, going to see his urologist, and then the BIGGY the MRI of his brain. Next week is FULL!! Well I'm going to hop in a hot steamy shower in hopes that I can "break" the "crud".

GRILL'N for the GUYS

Well here he is.....our knight in shining armor, Mike at Custom Family Homes. He has stuck his neck out and gone above and beyond the call for our family. I will never be able to THANK him enough for ALL that he has already done and continues to DO in helping with our home come to life. Mike THANKS for not running the other way and helping us take this project on full force. YOU ROCK ~ there will ALWAYS be a special place in my heart for you!!

Well it's coming!! WOW, simply breath taking. Today the family went out for lunch and grilled out for the crew out at the house. They are doing a phenomenal job out there, these guys are AWESOME! I mean look at it ~ what a great bunch of guys ~ I can't say enough about them. The backyard is even progressing....YAY!Avrianna's new trait "in training" for ~ watch out guys, LOLThanks EJ ~ Good LUCK tomorrow with the new addition to your family!

Danny had Vision and OT therapy today....he actually played with them and stayed awake n alert the whole time. Now that progress, YAY!! Tomorrow is PT along with Speech so we'll see if they get the same from Danny too.

Well I better get going....Grey's Anatomy season finale' is on tonight. Can't wait! Me,a glass of wine, and Grey's. One kid is clean and the other is "getting there" so need to wrap things up. Thanks for stopping in.

Today is my nephew's birthday....HAPPY 7th BIRTHDAY Tyler, and my father in law's birthday....Happy Birthday PAPA ~ WE LOVE YOU GUYS! On Mother's Day we went to my Mom's house and celebrated the day along with Tyler's birthday. It was a very nice day! I got to sleep in, Dan made breakfast, and we were wonderfully lazy :)
Today I decided to go and donate Plasma again...after much thought I knew in my heart it was a good thing. My heart was hurt and once I got over the emotional train wreck of days I was having I decided to suck it up and go. It was the situation not the place...I truly do respect their decision and in the long run it was a better idea NOT to have him there but it just hurt to hear if from someone else. Today was a good day donating and I will continue to donate. Both my kids needed Plasma and I know first hand how important it is. Just paying it forward!!
Tomorrow is a day of meetings for me and lil man, but they are all good. In the morning I'm taking him with me to go to a meeting in regards to the new house, then I'm taking us out to lunch. In the afternoon Connie, Griffin, Myself & Danny are going to the Fox Valley Tech to speak in front of a class of students that are enrolled in a course for Children with Differing Abilities. That is always fun.....I get to spend time bragging about my kids :)
Not too much to report so that is a good thing.....KNOCK ON WOOD, LOL
Thanks for stopping by....

Me & My Lil Man

Today definitely didn't go as I had anticipated it to go.....will anything ever go smoothly? It's not that I had alot planned plus Dan & Avrianna had left this morning for Tomahawk so I had thought today was going to be a breeze just me and my lil man. NOT :( I got up early and saw Dan & Avrianna off, I was ready for the day, and Danny was a prince....it was my first appt of the day and that put me in raw form, augh. I had my second appt to donate plasma and I was excited to go, but with Dan not being home and me having another appt right after I needed to take Danny along. I called yesterday to let them know what they were in for and to see if they were ok with that, which they were.....until I got there. Then they felt uncomfortable with having Danny there. There were other kids in the nursery so I informed her to make sure no one touches his hands or face (for obvious reasons) and she couldn't guarantee me that it wouldn't happen because of all the children she had. Then I asked if he could just stay by me on the floor while I was donating and again they were not comfortable with that. So Danny and I left....I was so disappointed I was near tears walking out. I could see their reaction like that if I didn't call the day before to give them a heads up, but come on! I felt just awful......in instances like this I am very glad Danny doesn't understand cuz what a terrible feeling. Oh well their loss! No plasma from me for them :( Another botched attempt to do a good deed.
After that Danny and I went to the new house......he just LOVES hearing all the BIG "toys" out there. I'm for certain that if he was able he would be climbing all over the machines out there! He would be so proud sitting in one and being "one of the guys". But we all KNOW that isn't going to happen. Just a HUGE reflection day.....things like this morning to SLAP you in the face and put you right into place....SOCIETY SUCKS and how I allowed myself to "go there". What a gorgeous day and I see the neighbor kids (younger then Danny) riding their bikes, running a screaming while playing tag, with their HUGE kool aid mustache. And my heart just aches :(
I sit here typing in tears as I have to reposition his head in his wheelchair as he "pauses" his breath while sleeping and his lips start to turn blue. REALITY SUCKS!! What I would give for him to have what was taken away....MY DREAMS. He is the sweetest thing EVER and what he's been through in his life so far, hell what's in store for him still in his life ..... it's just cruel !!
On a good note ~ Danny had a good PT session today. I got him in his stander and tilted him at more of an upright position to see how he would tolerate it and then PT Dan, when he was here, could look for any issues if Danny had any.
Danny listening to Elmo's story....in the stander :)Danny having a conversation with Elmo :)They were having a real in depth conversation there for awhile, heehee. He is my IncrediBoy today.

Last weekend we were able to see what the head busts look like of the kids. Dan & I were having a local artist, Tim Brunn, do full body statues of the kids for the new house, but I am running out of room, heehee. So we decided to have him just do the kids heads....OMG are they AWESOME and so life like. Now that they are just the heads I can showcase both of them in my living room so I can look at them everyday. Tim, thank you so much for capturing "the moment" in both the kids...I will treasure them ALWAYS! I can't wait to see them finished and be able to show them off.

I still have a weird tingling in my legs and lower back when I pull my head forward... at the end of the month I have a physical so if it doesn't go away I'll let the doc know. I'm sure I tweeked something carrying lil man, sigh. My baby isn't a baby any more.

Well Lil man and I are going to go sit on the deck, cuddle, and finish the day on a GOOD note(yeah I'm going to have a cocktail, too). I LOVE my lil man so much :)

Our walk is on May 30th so ~ Please pledge your donations HERE and sponsor us in our walk for the Fox Valley Sibling Support Network fundraising walk. To read more on the FVSSN.

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Funny Feeling

So I think I have something wrong with my neck or back .... the last 3 days every time I bend over or move my head down I get this tingley feeling that starts at my lower back and runs down both my legs. It doesn't hurt ... it just feels like my butt and legs are asleep until I stand properly again, it's a weird feeling. I'm not sure what to do or if I should do anything, augh like I need this.

Holy increase in the swine flu cases in 24 hours.....I am so glad I cancelled all outpatient therapy for now. I can't wait till our new home is done and I have the lift, equipment and availability to keep his therapies going instead of cancelling them and waiting out what's going on in the community.

Everyday the house has new things coming along....We have Walls~

this is Danny's room

Fireplace in the Great RoomMaster bath tubThey are getting the driveway set ... these two pictures are of Avrianna in the equipment that Earth Works brought out, Dan (yeap another Dan) thanks for EVERYTHING!Dan took Avrianna for alil ride....those two! What's next a Harley? HeeheeDanny decided to take a LONG snooze today...like he got up for the day at 4 in the afternoon. After that I gave him a shower and put him in his floor sitter....What a BIG BOY, I LOVE it when he is in this chairDo you think he ejoys playing with Elmo?

Well better get going and help make dinner....we need to beat the band of storms so we can grill our steaks. Take care! Thanks for following us!