Wednesday, December 31, 2008
Last night we had family movie night and watched Kung Fu Panda, again.....yeap it was painful but Avrianna & Danny love it!
Stay safe tonight! Reflect on the past, Live life for today, and move towards the future!! Not too much to report so that's nice for you guys, LOL. Happy New Year, 2009!
Tuesday, December 30, 2008
Let it snow...........AGAIN, ugh. I wish I could click my heels 3 times and say "There's no place like Florida", heehee. Time is just not moving fast enough for me and ALL this snow is making it worse. Too dream, sigh!!! We are anticipating another 6" tonight, YUCK.
Danny has been playing possum with the camera and getting him to "talking", so no go there...but I have the camera close and hidden so just maybe I can catch him, LOL. He got a clean over today with a sponge bath, nail clipping, hair washing, and then his favorite a lotion massage. He even gave me those eyes like.....Oh don't stop this is HEAVEN. I managed to slip my hand down the back of his brace and give his lower back a rub down. He LOVED it!!
Avrianna has been back in the swing of things with her school work. It was alil rough to get the routines back in place since surgery but we are pulling ahead once again. We have incorporated the new Wii Fit games that we got for Christmas in for our daily PE. We have a great time playing it together and it keeps us moving inside...hopefully getting Mom in shape too, LOL. Avrianna also got alot of computer school stuff so she was SO excited when I downloaded all of her material onto our old laptop. She has been working so hard and doing such a great job ..... she deserves it!
We are getting more disappointing news in regards to the adoption process. This whole getting the home study done is becoming a ROYAL pain. The social worker is coming out to the house for our meetings which is very helpful for us but to get the "training" done is nuts. Dan and I had already done our 16 hours training but because it was with our first agency the second wouldn't honor it so we need to do it over on their terms. With the first one we were able to due Internet courses so we could do it on our time frame, but with this new one we need to meet somewhere and the options are not working for us. Dan had gone to part of it and was going to finish it in Jan but instead they didn't sign him up for it and now the course is FULL. So Dan can't finish his part and I can't get mine done. I had planned for this and even had gotten someone to watch the kids for us....but now we can't get in. I requested forms twice to get registered with no replies from a social worker and now we are OUT OF LUCK! I am so pissy.....don't go the extra mile to help out a family that wants a child. The system SUCKS right now!
Please keep our good CB family in your thoughts today as today would have been Angel Jayden's birthday. They are missing him so MUCH! To follow their story www.caringbridge.org/visit/jayden HAPPY Birthday Jayden....balloons were sent off your way!
Monday, December 29, 2008
Bedrooms Avrianna to the left, Master in the middle, Master bath, and Danny's far rightRear of house and Guest Bedroom (to left)Looking at rear of house from the South
Saturday, December 27, 2008
Danny is doing better but still requires his pain meds. Yesterday he had another blow out for me, LOL. So I am praying that this incision doesn't get infected. I swear the more I try to keep it clean the more HE thinks he needs to keep it dirty, what a BOY!!
Well just figured out my home phone line isn't working.....but the computer is??? That is weird but will need to call the phone company to see what the deal is. It is super duper foggy here and even raining? Only in Wisconsin can we get a record 39.7" of snow fall in December and then the last few days of December it rains. Well now Dan won't have to put the extension on the snow blower, as the snow banks were getting so tall the snow blower shoot wasn't able to get over them causing everything to hit the banks and blow right back at Dan, LOL. Alot of the snow is melting, YAY! I just hope the temp doesn't drop and this all freeze or it could get dangerous out! Take care
Thursday, December 25, 2008
Danny blessed us with a HUGE gift.....a MAJOR blow out, YUCK! I mean MAJOR. It took all of me, Dan, and Avrianna helping to get the job cleaned up. I even had to change all his brace padding, that was alot of fun, NOT! But thanks to all the team work from the family he was cleaned up in not time. Of course because I gave him a sponge bath last night he couldn't stay clean for long. Only CONCERNING issue is that his gauze pads over the questionable incision on his belly were saturated in BM, Oh NO! I cleaned it out as good as I could, poor lil guy cried so hard :( and I put bacitracin ointment with new gauze pads on. Now we are just hoping for the best....no infections....cross your fingers. With an open incision and BM soaked gauze pads things don't look to good thought. I am going to take some more pictures tomorrow (another warning just in case I due post them on here) so Dr Kasper can see them again and we can get his opinion.
AssemblingInstructingAvrianna giving her Dad a run for his Money....she is SO GOOD!!
Wednesday, December 24, 2008
Look he CAN hold onto something when HE wants too.....Yeap I'm training him well....he is holding Dan's wine glass. He just needed an incentive!! As you can see Danny and I are not snow people in this family we don't go out in it unless we HAVE to.Just thought this picture turned out neet!! :)We had a nice quiet dinner at home with just us four and Avrianna can't wait to fall asleep so she can wake up early!
On the first day of Christmas, the good Lord gave to me:a child with a disability.
On the second day of Christmas, the good Lord gave to me:a heart full of love for my child with a disability.
On the third day of Christmas, the good Lord gave to me:an ache in my heart and a heart full of love for my child witha disability.
On the fourth day of Christmas, the good Lord gave to me:a tear in my eyes, an ache in my heart and a heart full of lovefor my child with a disability.
On the fifth day of Christmas, the good Lord gave to me:an unsuspected strength for the tear in my eyes and the ache inmy heart and my heart full of love for my child with a disability.
On the sixth day of Christmas, the good Lord gave to me:a ray of hope, an unsuspected strength for the tear in my eyesand the ache in my heart and my heart full of love for my childwith a disability.
On the seventh day of Christmas, the good Lord gave to me:a sense of humor, a ray of hope, an unsuspected strength for thetear in my eyes and the ache in my heart and my heart full of lovefor my child with a disability.
On the eighth day of Christmas, the good Lord gave to me:supportive friends, a sense of humor, a ray of hope, anunsuspected strength for the tear in my eyes and the ache in myheart and my heart full of love for my child with a disability.
On the ninth day of Christmas, the good Lord gave to me:remarkable doctors, supportive friends, a sense of humor, a rayof hope, an unsuspected strength for the tear in my eyes and theache in heart and my heart full of love for my child with adisability.
On the tenth day of Christmas, the good Lord gave to me:an appreciation of small accomplishments, remarkable doctors,supportive friends, a sense of humor, a ray of hope, anunsuspected strength for the tear in my eyes and the ache inmy heart and my heart full of love for my child with a disability.
On the eleventh day of Christmas, the good Lord gave to me:a sense of pride, an appreciation of small accomplishments,remarkable doctors, supportive friends, a sense of humor, a rayof hope, an unsuspected strength for the tear in my eyes and theache in my heart and my heart full of love for my child with adisability.
On the twelfth day of Christmas, the good Lord said to me:Reach out and share your sense of pride, your appreciation of smallaccomplishments, your remarkable doctors, your supportive friends,your sense of humor, your ray of hope, your unsuspected strength fortears in your eyes and the ache in your heart and your heart full oflove for your child with a disability.
My back yard with drifts so tall Bailey would drop and get lost if she takes the wrong step, LOL. Dan has been snowblowing a path in the backyard so Bailey at least has a place to "GO". Have A Very Merry Christmas and A Happy New Year~ The Osero's
Tuesday, December 23, 2008
Doesn't it look good!!!!! Yay :) I put some bacitracin ointment on it so it stays moist and has a protection barrier in the event he gets it "dirty". LOL Take care!
Here he is 5 years ago....boy what I long way he had come in such a short time!
Monday, December 22, 2008
The last picture of my son well and healthy and you can't even see him, sigh. Yes I was HUGE. The standing joke was I was Shamu and I should have been wearing a Moo-moo, LOL! Remember this is me 3 weeks early and I was miserable as I had gained around 100 lbs and was so swollen. I had started contraction 3 months before this picture and was on bed rest. I would give ANYTHING to go back to THAT moment of misery and excitement and play things out differently.
What a roller coaster ride. Tomorrow will bring on more emotions but I tend to use today as the "pity" day and celebrate tomorrow. Celebrate all of his accomplishments and the fact that I had another year to make wonderful memories with him. Something I thought I would never be able to do.
I look at that picture and see a women that no longer exsists! Am I a better person now, yes....but at what cost? The guilt I still hold....what if I pushed harder, what if I demanded a C-section, what if, what if , what if. All the what if's won't change things but I find myself going down that road once in awhile. I'm sure this year is alil harder as I'm not planning a Big Bash for his party (keeping busy keeps my mind off things) as I always do with friends, family, and Santa who always in his busy schedule makes a stop for Danny's special day.
Amazing how something so exciting and joyful can turn into the worst nightmare and the most painful episode in your life. For that Life is not Fair....to look back at the day your child is born and still have such fear. For your son to be born with no heart rate and not breathing....I was robbed of the wonderful experience. I can't look back at his delivery and say it was good one and for that my heart has this gaping hole. All the expectations flew out the door in ONE MOMENT!! I just screamed for him the live what else is a mother suppose to do? EVERYTHING was suppose to be OK.Well here I am five years later! What a difference in size.....but that's only what you can see, I am a TOTALLY different person inside too. My lifestyle, my attitude, my parenting, my friends, ME in general ALL DIFFERENT. It's not all bad, but I just wish all the dreams and expectations I had 5 years ago today still lived strong! I love my children so much words can not express....this is not what I had dreamed for them. For my daughter to ask why her friends brothers can walk, talk and play and NOT hers.....just breaks my heart. For my son to not even be able to eat a piece of birthday cake on his big day (and every birthday is a BIG day)....can you imagine? To wish the only emergency would be some stitches due to a fall on the driveway playing and running around with friends, not 14 surgeries under his belt at the rip old age of 5 and so MANY hospitalization I can't even count. To wonder EVERY MOMENT if this is the last MOMENT with him. You never know when but it only takes that ONE MOMENT ...... believe me I know! That fear lives deep down inside me, I try not to dwell, but it is always there. I had lost him once and he was brought back to me and with the close calls he has had it shows me how fragile your LIFE is. I LOVE YOU DANNY.......Tomorrow you are going to be 5, WOW!!!!! Thanks for keeping on fighting ....... as long as you have the fight in you I will FIGHT for you. MOM
Sunday, December 21, 2008
Here is a post I did this morning in one of my Yahoo Groups! If anyone is interested
I have 5+ cases of Promote w/Fiber. If any one can use them they are yours. Just pay shipping. One case is about 16 lbs and my zip code is 54956 ~ if you'd like to figure shipping out. Just email me if you're interested. I believe I have 2 more cases sitting in Florida too I will post when I get back down there and whatever I have is available too the zip down there is 33928. Go figure I just filled the order and then they changed his food. Hope everyone is staying warm and enjoying the holiday season. Take care!
Lori Osero - Mom toAvrianna - 6yrs (Hereditary Spherocytosis, Homeschooled & Attitude)Danny - 4.75yrs (HIE, Severe Spastic Quad CP, Seizures, Gtube, Unstable temperature, COPD & Sleep Apnea,Precocious Puberty,ITB Pump, Kyphoscoliosis, Nissen, SIADH, Hydronefrosis both kidneys, Cortical Vision Impairment,Renal Tubular Acidosis,Optical Atrophy, Right hip dislocated, Laryngo & Tracheal & Broncial malacia, C Diff,Chronic Ear Infections, Homebound therapies)
Here is a list of yahoo groups that I follow : some of you may have found this site because of one of the groups.....they are full of wonderful people that have helped me termeniously in support of our families journies. You don't see a group that I follow that may be beneficial to us please let me know
Cortical Vision Impairment (Danny's has CVI) - http://groups.yahoo.com/group/Corticalvisionimpairments/
Hypoxic Ischemic Encephelapathy (Danny sustained HIE during delivery and that's the cause for many of his medical issues ~ means lack of blood and oxygen in the brain)
Parents of Severly Disabled Children -
Special Child Exchange - Wonderful group that posts to recycle or sell no longer used medical forms, supplies, equipment, and toys that our kiddos can play with.
Special Needs Umbrella - support group full of Parents/Caregivers that are located in the Fox Valley (WI) area
Our Special Needs Children - Support with ALL different types of therapies and education for our kiddos
Spherocytosis ~ This is the blood disorder that Avrianna and her father have
Trach Parents ~ Danny has been teetering with a Trach so I am trying to get as much info as possible
Homeschool sites :
Saturday, December 20, 2008
My mom came over today for a couple hours and watched the kids for an hour while I ran to Walmart....that place was NUTS! I can't believe all the people. I needed to get some odds and ends so I was out of there in no time but some of those people you could tell had ALOT to do. YIKES!!! Thanks Nanny for the hour break .... even though it was for grocery shopping it was nice to get out for just a few.
Let it snow once again....it is really pretty out, but this snow thing is getting old. I'm not a snow or cold lover if you haven't figured it out. LOL! I can't believe how much it has snowed this season already. Tomorrow is the first official day of winter so I can only imagine how much more we are in store for, sigh.
Friday, December 19, 2008
GERMS stay OUT!! We are laying low for the holidays so the kids don't get sick. With Avrianna not having a spleen she can't fight off those nasty virus, bugs, and infections. If Avrianna get so much has a fever now I have to bring her in, so we are locking out any visitors that may want to visit that are sick. And Danny has NO pants so we are staying inside, LOL! Visitors are totally welcome but please be considerate and post pone any visits if under the weather with ANYTHING! Thanks