Gold Star!

WOW ~ what a busy two days that has been, but we got it all done!! So to recap for you all :

This is how I got him around with his brace on...he was so LONG, but comfy. I had to have him reclined all the way to get him to fit and then I put him in a sleeping bag so his leg didn't get cold with NO pants on, lol. We did it! He ended up in the chair for both days just about all day long and he was so GOOD!

Wednesday:

Our first appt was GI at 11:50 in Milwaukee -

He defiantly is a BIG boy...and they are concerned with his weight still 54lbs. A dietitian had come into talk with us about his feedings. We didn't see eye to eye so I just referred her to talk with the new dietitian we are following and have our dietitian get back to us on any changes they felt needed. First she wanted to cut 2 more oz of formula out of his diet.....Danny takes only 16oz (that is less then a can and half of soda) a day worth of formula. He has an intake of 20mg per kilo (I know too much info) of calories with the amount where a "regular" child needs about 80mg per kilo for just a maintenance. I know Danny's is teetering dangerously with the amount (or lack there of) formula and she wanted to decrease it, NO WAY! Obviously Danny isn't gaining weight due to calories but because of some his "global issues" (I hate it when people use that,lol). Then she wanted to take out his liquid multi vitamin for a "Complete" vitamin like Flintstones but I'm not sure we are going to do that either as the "Complete" has Iron in it (Danny's iron levels were through the roof, so he doesn't need anymore of that) and Selenium which we just increased already so adding more might "boil" the pot over. I need to do some more research and check with Dr Kasper on that one. She did have one good point and that was too add Calcium to his diet....not only is he lacking, but due to the precocious puberty his bones need all the help that they can get as they could get brittle. The G-tube site is looking great and we still have some time before Danny needs to have surgery to have it repositioned lower, YAY! So we'll see the GI doc in 6 months.

From GI we went to get his ortho X-rays that were suppose to be scheduled, and of course they weren't. Thankfully the ladies made an exception and got Danny in. Once in the xray room and Danny was on the table they ask ME about the brace, like I know! No one knew if it could or should come off for the xray....call me crazy but isn't that why we were down there to do xrays to see if the hip healed so the brace could come off? Some times I wonder, OK MOST of the time I wonder. So they did xrays with the brace on until someone got ahold of the doc and he said nope the brace is suppose to be OFF for the xrays. So we took it off. Danny was in some discomfort at first but seemed to do pretty good. When xrays were done I asked if we should put the brace back on as we weren't seeing the doctor till the next day and they all looked at each other and said I'm not sure, What do you think? Are you kidding me? I put the brace on and we went on to his next appt.

The Endocrine doc....she was a wealth of knowledge....I love knowledge, they can never tell me too much as I am a need to know kind of mom! They told me that yes he is indeed in puberty, which I knew already. They sent us down to lab (only 1 attempt) for more blood test to rule in or out some issues with him going into puberty... is it due to the amount and location of his brain damage or is their some underlying issues too. Then she sent us to have a bone age xray done. This tells you not chronologically how old you are but how old you are by your bone growth. This xray had shown that my 5 year old son is about the same bone grwoth as an 8 year old. Then add the puberty age....which he is at about a 12 year old, ugh....my head is spinning and it's only the first day, lol. What happened to my 5 year old lil boy? This growing up so fast phrase....well Danny's is taking it to new levels, oh my. We should have the test results back in about 2 weeks.

Unfortunately the Ronald McDonald House was full so Danny and I had to get a hotel room, but it wasn't too bad as it was relatively close to the hospital. We got in and ready for bed right away, then watched movies till 11 last night. Just me and him snuggling :)

Crazy day = Today

First appt of the day was at 9am in the clinic building with ENT. Great reports there! He does still have excess fluid in his right ear (the doc took this vacuum to it to get all the gook out) so I need to keep up with the ear drops a few more days. He said see you in 4-6 month, YAY!

Then we were off to the other side of town to another clinic building with the ortho doc by 10:15. We made it with time to spare. The hip is alot better, whoo, and the ball in now in the socket, woohoo!!!!!! The brace can come off. I was interested in seeing all the new hardware that was installed. He has one plate and about 6 screws holding his right leg together and then the bone graph on the right hip socket. Wow it just amazing me what they can do. I left the brace on for the rest of today till we got home. One kind of weird thing is that both of the incisions this time are: blistering, cauliflowering, or the correct term - Keloid. Which is weird as if you have the trait of keliod scars normally you always do but Danny has never had this issue before but now BOTH incisions from this last surgery are doing it. Once again an enigma??

After this appt we were back on the road to be back to the clinic building by 11:30. I know give me a challenge....3 appt in 3 hours at two different places....We made it!!! And they thought it couldn't be done. With time to spare once again =) Danny's next appt was with Hematology. Just when we can write this specialty off from Avrianna, Danny needs one. Well we did alot of talking and the though was the issues were a flook due to the surgery and his body being stressed so they sent us back down to lab (only 2 attempts) for more blood work to rule out the "off" labs during his hospital stay. Well I was called on the way home that the blood work today was also off so they are doing more tests to see why or what's going on. His PTT level (rate that his blood clots) was still delayed. Which means he can bleed more. I will have those results back next week some time.

From there we had to walk across the hallway to his last appt, Pulmnology, YAY! The doc says Danny looks great and a big kudos to mom for making sure Danny didn't get any respiratory crap will being laid up, big smile. They checked to make sure his Bipap was still working properly and they commented on my engineered mask/head gear that I made for Danny. The ones out on the market just dont work for Danny so I took 3 different one to make Danny's. I pulled out all my tricks to make this work for him as his next step was a trach and I was in no way going to give into that yet.

Well here he is at home and can you see what missing?He did awesome when I took him out of the brace. No cries or whimpers. He did have a frazzled look but then.... here it is.....my Danny SMILE :)

I'm sure he still has a long road ahead of him, but he's such a good trooper. A GOLD STAR for my lil man. Thanks for following our journey! Please sign our guestbook or write in our comments to let Danny know you stopped by.

1 week from TODAY!

I am amazed how fast the six weeks went....well at least for myself, for Danny it might have been a different story. Next week Thursday he is free from his brace, YAY!! Dan and I were recapping the recovery and it went so well, as I had anticipated the worst. Danny's recoveries in the past have tended to swing towards the worst rather then OK. So I am pleasantly surprised! Thursday night when we get home Danny has a date with the tub.........and he is going to soak soak soak to get the sweaty surgery stink off of him. The sponge bathes just don't do the trick. I am going to leave his bed in the living room as that too has turned into a good change. It is so nice to have Danny comfy and part of the family ALL THE TIME! Laying him on a couch just doesn't do the trick either plus when I lay him on the couch he consumes the whole thing now..he just doesn't listen when I tell him to STOP GROWING, LOL! Yesterday and last night Danny started to get VERY CONGESTED...to the point where he was crackling when he took a breath. I am not excited about that, but his oxygen stats are good right now and I have ALL the equipment to intervene if he should get worse. He had once apnea episode during his nap yesterday but if was brief. Today he seems better but I will be watching him close today. I contribute alot of the junkiness to him laying down all day.
I haven't heard how Ms Maria is doing since her fall, but might call her today. With a broken nose I'm sure she isn't feeling GREAT! We are thinking of you Ms Maria!
With school being closed today (we are already at -41, OMG) Danny isn't going to have therapy today either. Boy therapy just isn't working out for lil man this year, I hope this isn't going to be the way the rest of the year goes, ugh! Guess he is just stuck with me, LOL. I am going to give him a sponge bath today and really stretch him out, so I'm sure he will take a nap this afternoon. Avrianna still has her school today......snow/cold days don't effect her, heehee. I know I'm mean!
Cameron and Zachary are still in the hospital so please continue to pray and check out their sites. Thanks for following our story! Stay warm today! If interested check out our current house that is for sale (link also to the left). Please sign our guestbook or make a comment and let us know you stopped by.

Stuff

Yesterday was a day filled of a whole lot of nothing, let me explain. Danny was scheduled to have his first OT but I received an email in the am that the therapist would not be coming out as she woke up with pink eye....thanks for canceling Ms Kristi and we hope you feel better. Hope to see you next week! So the afternoon was pretty much open with the exception of Avrianna's swimming. Well she was suppose to have swimming but when we arrived we found the doors at Club West to be locked and the establishment no longer in business....WTF? No phone call, no letter, no nothing! So needless to say Avrianna was VERY disappointed and had wet eyes as we left to go back home. I will have to find some where else to take her for swimming, sigh. Once we got home I filled the tub up, loaded it with bubbles, and with her swim suit and goggles on in she went, heehee. A mini swim if you will.

Then I got ready to GO OUT! I know I couldn't believe it myself. The neighbors took me out to Waverly for dinner and then we saw Neal McCoy. We had a great time...I even caught his autographed hat that he threw into the audience....I'm never lucky like that, WOW. I got his CD too! But on a somber note.....I had fun and all but reality still seems to slap me in the face, good and bad....I went to use the restroom which of course if FULL at these functions only to find a lady in the first stall had fallen (she had fixed AFO's on and used a cane). The floor was wet because of all the snow and crap outside so I can only assume her cane slipped out from under her and there she laid....with the bathroom full NO ONE was helping her, I was appalled....so after another women helped me to unlock the door I went into the stall to help her out. I'm sure she was just beside herself not only to have fallen but with her pants still down none the less. Then you have all these drunk women in the bathroom staring, making comments, but not helping....WHATEVER! Thankfully the women who helped unlock the door for me realized I had all I could do to pick her up and helped balance her for me to pull her pants up....she wasn't the lightest, but I couldn't leave her lay there. I didn't want to open the door till her pants were up, to give her some dignity. I felt awful for her and the situation that no one helped her until I came. She was so apologetic and kept saying you don't HAVE to help me......with my reply YES, YES I DO!! I just couldn't get back into the swing of the concert after that, but I still did have a good time overall. I GOT his hat,LOL.

Today was a full day! The kids and I went to Theda Clark to the Children's Specialty clinic to have Avrianna's follow-up appt with the surgeon. She got a GOLD star! Everything looks great! Her hemoglobin was 13.9 OMG that is awesome, no wonder why she is bouncing off the walls as her "normal" was around 9-10. The surgeon stated he was impressed with how well her numbers have progressed and in such a short time. Her platelets are High but with my understanding that too will get better. As her bone marrow has been used to reproducing her blood cells faster all the time with the spleen in and it just has to get use to having no spleen.

I got word today that the family is going to go on a Dolphin excursion in one of the ports on Avrianna's Make A Wish trip. I thought she would LOVE to swim with the dolphins but was unsure if we were going to be able to all go together because of the lack of accessiblity. We ARE, and she is SO EXCITED!!

Danny had his follow up appt with Dr Kasper on his incisions and he to got a GOLD Star too! There is one area the looks as the start of a pressure soar, but we caught it in time so it shouldn't cause too much problems...I just have to keep it clean, lubed, and loosen the brace. Other then that the kids are good! Danny had his PT come out today, but Danny wasn't into it at all. Looks like Ms Maria and Mr Scott Danny the most alert this time. This is what we got............

Poor Danny, the fresh air and out of the house for the first time in 3 weeks must have wiped him out! So no PT for him today, but Mr Dan and I were able to catch up on the goals and things that we are planning on doing for Danny in the next few months. I am so excited to get the therapies back up and running.

Dan's dad is coming tonight to celebrate Danny's birthday, Christmas, and New Years with us so a good time will be had tonight. It's always a blast when Papa and Claudia come down to visit. Avrianna is so excited to hang out with Claudia....these two are TWO PEAS IN A POD, they have SO MUCH FUN together! My grandparents will be joining us for drinks and dinner too so let me tell you the BS will be flying around here. Both my grandfather and Papa Dan are the KINGS of story telling, so I'm thinking I should put one of Danny's diapers on just to be safe, LOL. Well need to get things ready around here before everyone walks in the door at the same time.

Take care....please sign our guestbook or comment at the end of the post. The kids love it when it to them. If interested take a look at our current house that is for sale in the link Our Stories to the left. Thanks for following our journeys.

What an Ice Rink

OMG ~ This winter is just brutal!! I can't believe we came home for this....If Danny could travel I would be on the road, right now, back down to Florida. They say we haven't had a winter like this since the late 1880's. Last night it rained here...the air temp was great for rain but the ground not so much. Once the water hit the ground it instantly froze!! Everything looks like an ice rink. Dan gets to drive home in this crap as he is still in Tomahawk, YIKES!! Is it February yet...Florida here we come. The shine on EVERYTHING isn't due to it being wet...it's ALL ICE!
Last night I signed myself up on Facebook. That is fun!! Another addicting outlet for me :). Can you tell how much I get out? .....NEVER! So I sit and chat it up on the computer. I talked to so many of my classmates last night, it was AWESOME! Hey Guys!!!! I can't wait to rekindle old friendships once again. I was amazed to see how many of them still live in the area....again I don't get out much, heehee.
Avrianna woke up twice last night due to tummy aches (but I knew that was going to happen because she played so hard yesterday). She is still sleeping but that is to be expected with a rough night. I am going to call Monday and see if I should have her checked out. I don't think it is anything too alarming as the pain comes and goes so I'm still thinking it is spasms. But you never know after major surgery so I'll call....Friday she has her follow-up appt with the surgeon, but I don't think I am going to let it go that long without a simple phone call....call me over acting, LOL!
Danny slept pretty well...as well as you can with a HUGE brace on. He is such a trooper! I haven't had to give him any pain meds in the last 2 days, YAY!! It amazes my how well my kids are doing after their surgeries. He is awake and sounding like a motor (so junky) I am going to give him Mr Jiggles alil extra today and hope that clears things out. Not sure what is bring on the extra secretions but hoping I can get it under control. Never a dull moment here at the Osero House.
Connie gave me a plaque yesterday and it's so appropriate: Hope ~ Learn from yesterday, Live for today, and Hope for tomorrow. If it's one thing that I have learned in this journey.... You NEVER know what tomorrow brings so be thankful for what you have TODAY as Tomorrow you may not have it. Appreciate yourself, hold your love ones close, and go with the flow. Take care!
Check out our house that is for sale if interested ~ link is to the left in Our Stories

Pig Video & Half Way ~ 3rd Post

Well here is the link to Danny activating the pig switch toy. Now that I know it takes awhile to get the video's on here....but I figured it out. Yay! (the ohho at the end is because Elmo fell out of the bed, heehee)
http://www.youtube.com/watch?v=WlC9OIiOrD8

Oh yeah forgot to mention what today is............HALF WAY!! 3 weeks ago today the kids had their surgeries and 3 weeks from today Danny should be getting out of his brace. Woohoo!! As you can see on his arms still he can hold onto a bruise forever......three weeks out and he is still green and yellow all over, sigh.

Take care!

Appt, Appt, and more Appts!

Boy how exhausting today was. I sat on the phone ALL morning coordinating appts for the kids (well mostly Danny). After hours of moving things around it's all done....I hope. I have 3 full days of appts for Danny on Jan 21-22 and then again Feb 4. He is going to get a complete run down of follow-ups not only from the surgery but also with ALL the specialists that see Danny. 3 days to fit in all the docs, WOW.....I think the list is too long, LOL.
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!
Take care!

Lines are Back UP

With the wonderful winterland we are having for weather around here my phone line was down and then went my DSL, sigh....So two days later I am back up and running, YAY! It gave me some time to get the new laptop I got up and running though. Dan and I didn't really do any presents for ourselves this year with the new house we decided that we didn't need anything. But after the holiday there was a great sale going on around here and we decided that we wanted to upgrade a few of our things so we got a new laptop and a digital camera. I am hoping that I figure out the camera and can get some video's of the kids on here soon. That was one of my requests that the camera can also take videos with sound. I can't wait to show off lil man's voice. He can be stingy with it so I'm hoping I can get it!! I sense a challenge here, LOL.

Avrianna is doing well, but she continues to OVER DUE it during the day and wakes up in the middle of the night with tummy pains. So I need to get her to settle down more, but with her having MORE energy now since the surgery it is becoming NOT an easy task. She has a follow up with the surgeon on the 9th and he is coming here to the Valley so I don't have to drive down to Milwaukee for a 5 min appt.

Danny is doing better with his pain so I think he is on the right side of the road to recovery. He continues to want to keep his wounds "dirty or wet" so he's been keeping me busy. Knock on wood here but no infections and the sites are looking better and better every day. Now the hardest part of this is not being able to hold him...it's tearing me apart.

Today I went out for some errands (without kids) and it was a nice break away. I was able to go out and about at my own leisure. I even got a chance to run out the new house site and we have WALLS, Yay! I was excited to see that...with the crappy weather I had thought it would be slow moving.

Front entry

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

Take care!!

Santa's New Ride!!

Santa just doesn't know it yet, but I have a red nosed Dalmatian with jingle bells for a collar ready to pull the sleigh for the big night....Heehee. She is ALL ready to GO!!Isn't she the cutest!! This was Danny's halloween costume this year, but it was too hot in Florida for him to wear it. He JUST fit into it and look it fits her perfect.

This was our art project today....hand print reindeer. Danny even corporated (well for the most part!) so I could get his reindeer done too. My SMILE is back if only for a lil while......but it was GREAT to see! As you can see I have my sassy T-Shirt on today ..... You Can Have My Sister! HeeheeAvrianna was so excited as a big box came in the mail today addressed to her and her brother. Thank You so very much Uncle Tim and Amanda we love our gifts!

My sister is reading me your get well card to me....then she read me The Snowman book. It was so cool that they popped out of the book.So true ..... the pillow says it ALL. Uncle Tim is my Dad's BEST friend....they went to school together and Uncle Tim STILL puts up with my Dad, LOL!The pillow fits perfectly under my braces .... THANKS!
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

I am working on the Touched By Danny's Life scrapbook.....Please forward your picture and message to Danny and I will add it to the book. There is still time! Thanks to all of you that have already sent Danny your wonderful messages and pictures. This is such a great memory that I can read and show Danny for years to come.

It's all Good

Today is a better day. I have been able to get more of a "flow" with our "activities" in the Osero houseold. I even gave the kids a bath/shower/sponge bath and got out of the house with both kids in a snow storm this morning....not by choice, but I did it. Danny needed to go into Dr Kasper's office for post-op appt (Dr K was going to come to the house this morning and do the appt here but then remembered Danny needed labs.....You ROCK Dr K, Thanks for trying!) Danny's labs were AWESOME and back to Danny's "normal" so that rules out the anemia from chronic disease that the Hemo Dr was convinced he has. We took the dressing off so Dr K could see the incisions and they looked AWESOME too, no seeping at all so Dr K said we didn't have to dress it any more. Danny cried through the whole ripping of the tape off, poor thing. Let me tell you Danny has perfected the pouty lip thing....it will break your heart, SERIOUSLY. So Dr K said NO MORE TAPE and just let me lay a piece of gauze were the brace rubs his leg. Last night and still today he is in some significant pain so I have been round the clock giving him his pain meds. I think it weird that he did so well the first couple days with pain and now you know exactly when the meds are wearing off. I wonder if some of the pain is related to laying down all the time and missing being held (yeap I spoiled him and held him ALOT) I bet he misses his mommy holding him....Thanks again for all of you words of encourgement it mean more then words can say!! Take care

New Routines

OMG ~ Where does the day go? I am feeling alil overwhelmed with the new routines around here. I know once I get a better grip of getting things together I will get better at this. Well here is goes.... Avrianna gets her penicillin twice a day which is a feet all in its own, LOL, and her "normal"daily things ie:food, school,& play. Then my lil man he gets 2 meds 3x a day, one med 4x a day, 6 meds once a day, 2 meds 2x a day, Mr. Jiggles 3x a day (on an empty stomach), feeds every 1.5 hours, reposition every 2 hours, change diaper more often so pads don't get wet and me being able to taking a potty break once in awhile. I'm always doing something to lil man right now so I'm hoping I can get a better system in play SOON. His new antibiotic isn't sitting well in his tummy so I can't leave his side as he is wretching alot and I'm afraid of him aspirating. We are doing Mr. Jiggles more often for that reason and also because with him laying down for so long things are prone to settle in the lungs, with this brace on which is tight around his lung area so he can't take in deep breaths. This is just a recipe for pneumonia, I am so afraid!! For those of you who think I don't work....let me tell you this is the HARDEST job I've ever done in my life....I can only dream of 2 - 15minute breaks and a lunch hour through out the day, LOL. Today Dan went back to working on his things (he had some people schedule their vehicles to be repaired on and he has some meetings for a new property endeavor we are doing) as he was able to postpone his things to sit up at the hospital with us, which was a god sent as I don't know what I would have done with kids being on different floors. My piles are not getting touched but feel the need to have some "mommy" time and unwind on here. I so don't know what I would do if I didn't have this outlet, you my blog family mean so much to me. I can vent here and then go on with my day. Thanks for listening!! Here are some of my kiddos wathcing TV....how do you like the Christmas tree next to Danny's bed in the living room. A BIG THANK YOU to Avrianna and my aunt Bonnie who decorated my tree while I was up in the hospital with Danny as I don't think I'm going to have time to do anything before Christmas. I am so glad I got my shopping and wrapping done weeks ago!!! FYI ~ I have 5+ cases of Promote w/Fiber that we will not be using as they changed Danny's formula so if you or know any one that using this brand ....it's yours! Just let me know or I will give it to Danny's Pediatrician to see if he can use them as samples. Go figure I just get the order filled and they change it, ugh! Well need to go lil man is crying, yeap, still having pain issues too. Take care!

We are Home

Danny was discharged this evening. So much has gone on since the surgeries Friday, wow. My head is still spinning and I'm trying to grasp everything. We have now added 2 more specialist to the team for Danny and I will have to set up appt to follow up with them in the next few weeks, sigh. But at least Danny is getting figured out each step of the way and we are now on a great path for our newest journies. I wasn't too sure if we were really going to get out of there today....as this morning he went into the this wretching episode and then did it again just as we were about to walk out the door. I'm thinking it is the new antibiotic that is making his tummy upset. We'll see what the next couple doses do for him and then call Dr K in the am if it continues. Well I'm just exhausted so to bed I go. I will post more later. Take care and thanks for following our story!