Last night we had our formal dinner and let me say.....I had the best dressed family on this ship. I can't wait to post pictures! Danny was even in a suit and tie, heehee. I will try to post pictures, but they don't always work on this connection. Food is good, sun is better, and getting used to this live style is hard...NOT! The first night was not the best for me or Danny, but we are all having a great time. Today we went to Grand Caymen and looked around in some shops. Then came back to the ship...Avrianna and I went to the pool (I got burnt, sigh) and Dan and Danny took a nap. Tomorrow we port in Cozumel and that were Avrianna get to due her Dolphin excursion and she is so excited! Thanks for checking in on us....we're doing well!
In reading this mornings post I see I wasn't all with it (well as much as I thought I was) cuz some of it didn't make any sense. Well we stopped at Key West today and it was a nice time. We did some shopping and then back to the ship. Avrianna has been occupied most of the day either at the Club or Lab. This morning she made Flubber in the lab. Right now she is making a flower then off the deck 7 for games and fun, and then to Goofy's PJ party. They have it set up here at the ship that if you want to.... you drop the kids off and they can have a FULL fun filled day with the counselors. They page you if anything happens or if she wants to be picked up. I couldn't see sending her there all day, but we do drop her off here and there for some fun with the other kids. Well off to have a fruity drink with an umbrella in it....Take care! Will post later! I see some of the pictures won't download properly so I will try later.
Sorry I didn't update sooner...but it was very eventful on the ship for the first day. We got on the ship around 12:30 and went to eat some lunch at the buffet on the 9th floor while we waited for our rooms to be ready and the bags to be delivered. The food was very good and the excited for overwhelming. We got on board smoothly so that part when WONDERFUL! Once we got to our room Lil man decided to have the biggest and grossest blow out diaper I have EVER seen. So needless to say he had a new outfit on and we needed to get a new comforter for our bed (we haven't even left the port yet!). Once cleaned up we went for a walk to tour the ship and make a schedule for the evening plans. Around 4 we had a mandatory safety drill that went smoothly. To find out some how my camera's card got wiped out...not sure if there was a magnetic Field of some sort that we went through but we all the pictures we took are GONE, sigh! I was able to reformat the card and now all is good. So we went around to retake some of the pictures we could. Then we went up to Goofy's Pool stage to got to the send off party. It was a blast! Avrianna danced her heard out and Danny loved listening to the music and kids! Then the second blow out happen, agh! But I managed to save the outfit. Ok this is NOT GOOD! I have decided to discontinue the antibiotic to off the ship cuz this has to stop....I only brought one package of diapers (which should have be more then enough...now I'm not so sure). After that we went down to dinner at Lumiere's (it was done up like a scene in Beauty in the Beast). I managed to make it for about an hour and then I had to go to the bathroom (and FAST). So I didn't finish dinner or so anything else for the evening but have a date in the bathroom. Motion sickness ~ SUCKS! Danny stayed behind with me and watching TV and had 2 more blow outs, argh!! Dan and Avrianna went to the night show and ice cream. Dan was the hero last night...TOTALLY! This morning I feel ALOT better and i'm going to get ready for the day. I can only look forward to the rest of today and put yesterday behind us. Like I say NEVER a DULL moment with us. Well here are some pictures that we DO have.
Poor lil man has gotten a full blown ear infection! Yellow goo is coming out of his right ear, right eye, and his face on the right side under his eye is puffy. YUCK!! I called up to Dr Kasper and he faxed over a script for an antibiotic. I was hoping the ear drops would clear it up, but no go. After 4 days of drops it is continuing to get worse. UGH! I can only hope that it clears up enough for the cruise and that C-Diff (a nasty bug he gets when on strong antibiotics) doesn't come to visit on the ship. That would be terrible for everyone. So needless to say Danny hasn't gone to the pool since we've been here, but he is still enjoying not being bundled up. He has been sleeping MOST of the 24 hour day then being up (like only up for 4-6 hours) for the last 3 days, so I am keeping a close eye on him. Never a dull moment, hey? Well Avrianna and I are off to get some last minute things to pack for the trip. Take care!
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What a relaxing day....today after lunch I took the kids to my grandparents so Dan and I could run some errands. Avrianna went swimming with grandma and Danny hung out with grandpa watching ALL the judge shows and CNN (I'm not sure who took the longer nap, lol). Both kids were great! After our errands we decided, since the kids were doing well, to go see Grand Torino at the local theater, GREAT movie! I was trying to figure out the last time Dan and I went out together without children....it's been about a year. Then we treated ourselves to a dinner out (again ALONE) at a restaurant called Stir Crazy. It was so nice to have a conversation with him and not have MOM.....MOM......MOM! every 2 minutes. What a great relaxing day!
Hello faithful followers!! We made it and are just about all settled in. What a trip! The weather wasn't in our favor Friday night. About an hour before we were to depart it started to snow, sigh. Which wouldn't have been bad, but the ground was warm so the snow melted right away until it hit freezing temp....then it was a winter wonderland of ICE! The trip from my house to Chicago (which normally takes 3 hours) was 5 hours long and a slippery mess. I drove 45 mph and that was the fastest the RV would go without fish tailing. I was on guard!! I counted 9 accidents from my house to Milwaukee, yikes. I stopped driving around 3 am and then Dan took over, but not for long.......about 30 miles down there was a HUGE accident, just into Indiana, and they closed the freeway, yeap shut down the whole thing....so there we sat for 1.5 hours at 3 in the morning. I went to bed for some much needed shut eye and Dan got out to chit chatted with the semi drivers. So needless to say we are investing into a CB so we can be alarmed of this set back BEFORE we get stuck in it. The worst was we just passed a truck stop about 1 mile back so if we would have known early enough we could have stopped there and we all could have gotten a better night sleep instead of hanging out on the freeway. WOW talk about destruction in Kentucky....the whole state, on HWY 65, It was so sad to see, just about EVERY tree along the way was up rooted or broken in some way. From what I was told this isn't even the heart of the ice storm. WOW what a mess that needs to be cleaned up...well they won't run out of mulch or fire wood, heehee! So with the weather set back and the accident we were about 4 hours behind schedule already, ugh!! We still managed to get to the condo about 2:30 yesterday afternoon so we weren't too bad with time. The RV is cleaned out, washed, and already in storage. We just have to drop the sewer later today and then it will sit till we leave to go back to Wisconsin the end of April, but we won't talk about that yet, LOL. I have pretty much everything put away, Avrianna is doing her school work, and Dan & Danny are watching some TV (aka trying to stay out of my way, LOL). Here are some pictures of our travel...
Avrianna liked this Bridge coming into Kentucky as it looks like an A. So sleepy!?!
Just kick back and relax ~ Here is part of the crew just getting into FLORIDA ~ with the windows open and yeap feet hanging out, LOL.
This bus is MONTGOMERY GENTRY'S bus ~ WOW exciting...yeap I'm a Country Bumpkin, but they didn't come out, sigh! They were stopped in Georgia at the same gas station as we were at.I will post again later. Thanks for checking in on us!
I have just a few moments to show them off...then I'm off to finish packing the RV as we've decided to leave tonight when Dan and Avrianna come back from the dance. So we should be on the road about 10pm and we should be in Florida about Sunday night.
Here's Avrianna .... isn't she beautiful!! He Cleans up NICE!What a poser! She can work a camera, heeheeOk ~ MOM that's enough pictures! Here is the flowers Dan bought for her....he did GOOD!
Getting ready to go! We're leaving STOP with the pictures already!They are going to a friends house first and then they got a limo so about 5 dads and their daughters will be riding to the dance in style. I hope someone takes pictures and forwards some to me (hint hint) as I'm not able to be there for the BIG send off. Then they are going to eat first and then dance till about 9. WOW ~ they both should be tired when they get back, LOL.
I will post again when we get to the sunny state. Take care
What an evening here at the Osero household last night! I went to bed around midnight because Danny needed to be NPO (nothing to eat) after midnight for his upper GI at 11 today. After I went to bed lil Ms Avrianna came in saying she had a nightmare...so I crawled in bed with her. Then around 3 Mr Man was crying....I finally got him settled back down around 5 and took a few hour nap, WHEW! Needless to say I'm dragging my butt today, LOL. But managed to get myself ready and BOTH kids a bath before having to leave at 10:30 this morning. The anxiety level was HIGH as I was returning to the hospital that the kids were delivered in. I'm getting better though, so that's good. I even managed to pop my head into the NICU and show off Danny to the docs and nurses that took care of him. Another BIG step for me, but I'm very glad I did it....It was great seeing you guys once again! I gave them our new website so they can stay up and with our journey's too :). Danny's upper GI went well. Under an X-ray they pump a barium dye into his stomach through his G-tube to see if he is having any serious reflux and how his tummy is emptying. Everything looked pretty good...no signs of reflux (at that moment) and his tummy emptied into the small intestines well. WAY TO GO! Then we went up to see Dr Edgar for the baclofen pump to be refilled with new meds. I told Dr Edgar about the laughing spell the other day and asked about it being a seizure. I know, I know, I should just be happy about it, but Danny has NEVER done that before EVER. And yes there are seizures that do that, he said. So I am going to re post the link to the video of Danny laughing so he can check it out. Even though it was awesome and it made me cry.....I need to make sure he is ok and safe. Amazing how you have to take a laugh SERIOUSLY. I also rocked the boat alil and requested a MRI of Danny's head when we get back from Florida. I haven't seen images of his brain since he was days old. I want to see what REALLY happened to him. Dr. Edgar, bless his heart, warned me of what I might see (or lack there of) and he wanted to make sure I was OK with that. He asked why I wanted to see his brain...as many don't or won't. I'm so in the needed to know with my kids and I just NEED to know. I know it won't change how I feel about Danny and I can't change how he is, but I want to see his brain. I want to see the damage to get a better feel of why/how things play out with him. Well I need to get rolling as Avrianna has Pioneer's and then she is going to a Valentine's craft so I need to get her ready and get the last of her school work DONE! Thanks for following us!
What a stitch the show was...so cute! Well here she is in all her glory. I am so proud of Avrianna. She did so well! She remembered her lines in all her skits (she had 3) and the two songs: Mama Mia and Fabulous.
She's a STAR!
Work the camera, girl!Thank you bow after singing Mama Mia! I will try and download the video soon :o)
OMG ~ Ok this is what I woke up too...I flew out of bed thinking he was crying and something was wrong. Then this is what I found and he did this for about 5 minutes. Something hit his Funny bone. I was able to get a video of it.....YIPPEE!! I haven't see or heard this in OVER 2 years. It made my day! I hope it continues as he has Ms Maria (ST) and Mr Scott (teacher) coming today and I would LOVE to share in person :o). I am on such a HIGH now!
I was able to redeem myself with my hair stylist ability....The salon was open early this morning and I gave Dan & Avrianna hair cuts. No oop's either, LOL! Now they will be gorgeous for the Father Daughter Dance on Friday night. I will post pictures of them in their formal attire on Friday. Avrianna is SO excited! Tonight she has her Theatre debut so I'll post later tonight of that...she cant' wait!
Here are some pictures of my support group last night (aka our Ladies night). Thanks guys....I don't think I could be where I am TODAY without all your help and support. You guys ROCK!
What a nice time! I kept it a secret from Avrianna with what/who was coming over. I think she was overwhelmed (if that's even possible) as she acted alil shy (I know can you believe it). Eric and Norene came over bearing gifts, cake, and all the paperwork for our trip. My sister, BIL, and nephew came over to help celebrate her Wish. Thanks to everyone in making Avrianna's Wish come true. She is so excited to go on a cruise and see some Princess', we will be sailing off on the 21st-28th. It worked out that the family is going to go on a dolphin excursion in Cozumel...Avrianna & I will be swimming with the dolphins and Danny & Dan will be observing us. I'm so glad that this worked out and we ALL can go as a family.
Avrianna is playing with my nephew Tyler this afternoon over here....and I'm going to sit and cuddle with lil man. This afternoon (again, as this the third day in a row) he is whiny and irritated. I think it has something to do with being in the stander, he must get sore.
It's another wonderful day with weather, but I know it won't last......This is Wisconsin! I hope you all are going well.
Spinoza Bear who is Danny's best friend! This bear is awesome! If you don't have one I highly recommend him. Please click on him and see what he is all about in more depth. He is made to be a special need child's pal....he sings and tells stories about coping with issues ie: being different, loss, relaxation, friendship, and much more Here is the video I did of the two this morning. I am trying his switch at his head to see how he does with it there. It seems Danny's movement is ALWAYS his head goes to the right, the left arm goes up & down and and right arm goes side to side (in this order). So to me I would think the head is a better place from him to activate things as it's the first to move then the rest... and for a lil boy who "can't move, (HA)" that's alot of body moving before his right hand activates things. Well we'll see!! Enjoy (Now that I figured out to insert links on here....all you have to do is click on the words ie: Spinoza Bear and video and that will directly get you to the page...modern technology it's great, once I figure it all out, LOL) I will post later today of Avrianna's party. It's a great day!!!!!!!!!!!
We're having a heat wave, A tropical heat wave....sing it with me! It was gorgeous outside today if it didn't hit 50, it was close. After dropping Avrianna off at the Appleton Art Center for her sib shop Danny, Connie and myself walked the Ave. Yeap we were cool, lol. Danny even had his sunglasses on, YIPPEE! I wish I had a picture, but I didn't have the camera with. He is so COOL with his sun glasses on, and don't forget handsome. We went to Starbucks for some R&R, then we walked down the road for lunch, and then walked it all off. Yeap alil backwards but hey you know me :o) Avrianna had a blast at the sib shop. She made a family mobile, It's awesome! Then I took her to my sister's house to play. I came home and cleaned, getting it ready for when we leave for Florida (the count down has begun). I got ALOT accomplished! Seriously, Does the laundry EVER END? Danny was supervising me....he's really good at it. He makes sure I'm not dilly daling around and that I'm doing a good job. Thanks buddy! I got suckered into letting Avrianna sleep over at my sister's so she should be enjoying herself. Ha....I get the bed to myself, YAHOO! It's the small things, ay? Sweet Dreams. Dan is still up north so I get the whole bed to myself, awwwwwwwwwwwwwwwe. He called tonight and I guess he has all the lumber he needs cut down so they just have to get it on the dray and up to the shack to have it plained into the timbers needed for the house. Tomorrow Avrianan's Wish Granters are coming over for a lil Wish Party send off. She doesn 't know about it so I'm totally excited for her. I will post some pictures tomorrow evening. Avrianna can't wait to get on the Disney ship...I don't think she can even fathom how big it is going to be. Any of you guys been on the Disney cruise line and have some pointers for me? I always like to be prepared (that's the OCD coming out, heehee) I got a hold of Dr Kasper and he said that either the dentist lanced her lip or she chewed it (when her lip was numb). I looks good to him so I guess just let it be and let it heal....so once again, RELAX MOM! I can't help it, sorry. What a busy week we have in store for us. I have an old (no not in age, smarty) friend coming for coffee on Monday. I got back in touch with her on Facebook...I'm so addicted! Also Monday night I have my monthly support group(Parent 4 Parent) meeting with a bunch of mom's that have a child with a disability. What a support group! They are great! It's wonderful to be able to sit back and relax at happy hour with them BEFORE the meeting. Yeah doesn't that tell you how much FUN we have. This is definitely not the A typical support group and I love it. So if any one is intersted in joining, meet at the Thompson Center on College Ave at 6:30 or give me a buzz/email/jingle and you can meet with us BEFORE the actual meeting,lol...It's for any parent/caregiver of special needs children. Avrianna has her theatre show on Tuesday night and she can't wait for all the drama, lol. Therapies as usual in the week for Danny Tuesday (speech), Thursday (OT), and Friday (PT). Wednesday Danny is schedule for an upper GI to take a look if he is having reflux issues again, and then up to the fifth floor to see his Neuro (Dr Edgar) to have his pump refilled and possibly set down some more. I get my hair cut again on Thursday....I have to get used to this every 4-6 week thing again. Last month was the first time I cut my hair in a year. I am going to my hair style like this for awhile...so I've switched my "good deed" to donating Blood n Plasma. WHY NOT? It's only blood, I grow more, and alot of people need it. I guess I have a rare type 0+ so even more of a reason to do it, right? Friday is a special day....Dan is taking Avrianna to the Father Daughter winter formal dance n dinner. She is Ecstatic! I will go out and get them flowers, Avrianna already has her dress n shoes, and we'll have a girly afternoon doing hair n nails. I have to get the RV packed up and the house clean as one week from today we'll be heading it south for some much needed fun in the sun.
Danny had a great PT session this afternoon. He did tummy time without too much complaining and he got up in his stander. He did wonderful! You can even see a smirk on his face.Maybe even a smile? MAYBEWe haven't gotten him all the way up....but he's UP, YAHOO!Avrianna has been helping me clean out closets, start packing our bags , and cleaning of the room with bedding. We've been very busy merry maids today. Here is her mouth this afternoon...I think it's getting worse as the day goes on. UGH! Tomorrow Avrianna has another sibshop day and this one is at the Appleton Art center from 10-1. She is so excited! They are to bring in some pictures of themselves and their family for a mobile that they are going to do. She is so artzyfartzy! It's just me and with both kids this weekend as Dan went up North again to finish cutting lumber for the new house (old house for sale and info w/pics are to the left in Our Stories). Take care! Thanks for stopping by to see what's going on. Please take a moment to sign our guestbook or make a comment to let us know you stopped by.
Ok this is what her mouth looks like this morning...I hope this is not getting infected, yuck. I am going to call Dr Kasper and see if he can save the day! Either treat the wound or treat mom's worries, he's AWESOME.
Here it looks all white but....here is gives the truer color....green gray icky!! It doesn't seem to bother her. Just bothers MOM, sigh
This mornings eval went awesome with the Assitive Tech for Cesa 6. Once again I was wow'd with all the ideas to help Danny. We are going to try a different switch with Danny, start making some books that interest Danny (computer programs that we can make books about anything family, elmo, spinoza, therapist the list is endless, yea can you tell I'm excited), and the BIGGY.... They are thinking of getting him to try a power chair and activate it with his switch....I know this is crazy. I am spinning here. He did so well when he activated his switch to make the scooter go so maybe he will enjoy this too. Danny always tends to prove ME wrong and enjoy things that freak me out, I guess that's the BOY in him. I can't wait to see what kind of reaction we get from him with all these new ideas. I'm always for helping Danny be apart of his world and for him to enjoy being in it.....my saying: "You NEVER know what he will do.....Unless you LET him try! He is my HERO!
Then we were off to the dentist, sigh. The anxiety was VERY HIGH when we walked in the door. She picked up on the fact she just got her teeth cleaned last month...so she MUST be there to get her cavities filled (they were no fault of her own as they came in with cavities?). I had thought she might put her brave face on cuz her brother was there, but NO GO! She cried and sobbed and that's before we even got in the chair, YIKES! The dentist came in and just told her that if she wanted me to stay in the room she needed to relax or else I would have to go wait in the waiting room till she was done.......Avrianna did what he said and calmed down, sigh. Then he put this jelly on her gums and then............................THE SHOTS! They were over with and NO TEARS, OMG! They put the sealer on her back teeth and filled the two cavities and we were out of there in 30 minutes. She got done and said "mom, I didn't feel even the shots". OMG what a different experience....the only thing I can think of is the last time she cried so hard that the numbing gel came off and she was so tense she felt everything. I'm so glad the experience for her was better. The only issue now is at dinner she asked me if she had something on her gums....this is what I saw, not sure how or why it is there, but it's there. It doesn't seem to bother her much so that is good And the close up sorry for the graphics :o)
Wow I haven't posted in days...totally not the norm, ey? Today Danny and I had to head back down the Milwaukee for some more follow up appts. The day went well! First he saw the Eye doctor and nothing has change with Danny's eyes or dynamics of his eye. Both his optical nerves are gray which means they are damaged and/or dead but that is nothing new and he still has and always will have Cortical vision Impairment, which means his brain can NOT process what he sees. Danny is legally blind but can still see......He sees color and light , but doesn't get into the details of things. Every day, hour, minute is different with him and his sight....At times I think he can REALLY see but then it's gone. I guess this is a familiar trait with CVI. Then we went to see the Rehab doctor. He says Danny looks great and I am doing a WONDERFUL job giving Danny a quality of life. He did comment on how loose Danny's tone is, so I informed him that we turned up the baclofen pump to help keep his tone low. After another political battle with who could adjust the pump (it was implanted in Milwaukee but because of convenience for us we have Danny's Neuro maintain it in the Valley) cuz it was a it's not my pump yada yada yada.....But after contacting his Neuro in the Valley and getting his approval they went ahead while I was there and turned it back down in hopes to give him some more tone to work with. Thanks for helping Danny out....some doctors are really in it to HELP with what is in the best interest for the KIDS, and others well..... We try not to deal with them. After going over all that we are doing and have done the Rehab doc pretty much said he wasn't going to need to follow Danny any longer on an ongoing basis. If we need anything authorized or if we have any questions to give him a call but other then that Danny is good to go. Wow one specialist off the list! Tomorrow the kids have to go to the dentist. Danny is just an exam (he hasn't had his teeth cleaned yet) to make sure everything looks ok in his mouth. Avrianna has 2 cavities and then they are going to seal her teeth.....So for any of you in a 30 miles radius the screaming at 1:45 is Avrianna. She so hates needles !! I haven't even told her yet as she would already be uncontrollably upset. Last cavity didn't go very well and the dentist even got really sturn with her, not sure how the feel about that???? I am going to give them another try and we'll see if this is any smoother for everyone involved. If not I think I'm going to have to look else where for a new dentist. I will post tomorrow with the results, wish us luck! Also tomorrow morning Danny has an eval being done here at the house for about 2 hours with the Assistive Tech women for the school district. I am so excited to see and hear about her ideas and ways to help Danny communicate and be apart of his world. Well need to hit the hay. Sweet dreams to all!
http://www.youtube.com/watch?v=WumeVynSbWw Here's a video of Danny with Mr Jiggles ~ aka the PT vest. Now you can see what I'm talking about and why we call it Mr Jiggles. This is the second vest therapy already this morning is it's only 9:30am, argh. Danny woke up this morning very whiny and congetsted at about 6am. His face is flushed but no fever as of yet...probably just from the labored breathing. He is pooling his secretions in the back of his throat so it sounds like he's drowning at times, sigh. Amazing what a cough would do but his cough reflex sucks...a cough? What we take for granted!! I'm hoping the increase of Mr Jiggles keeps this crap out of his lungs. The moral of the story is we just can't go out as it will bite me in the butt about 24 hours later, ugh!!