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!

Bath day

Here are I am getting all cleaned up.....this is my shower/bath for the next 6 weeks. The cap on my head washes my hair it is so weird. The red mark on my belly is were they went to take the tape off and they took my skin with it, OUCH! But I am smiling, YAY! All clean!! And then my mom got me up in my chair and we went to visit our friends down the hall. YAY! Then I had a blow out so my Mom put me back in bed and gave me another sponge bath. Well I got to keep her busy, LOL. The Princess balloon is my sisters but she left it here for me so I wouldn't forget her. I MISS YOU AVRIANNA!!

Our good freinds Brenda and Ryan Prindle...thanks for being me sound board on this journey! Here it is the RYAN PRINDLE smile!!!

This is what WE do for daily entertainment! Heehee ~ LIFE IS GOOD, NOT! Look at ALL those machines, WOW!

This is Stacy, heehee. She didn't want me to take her picture.....Gotcha! Not too much to report today. I might be able to go home tomorrow so cross your fingers!!

Ups N Downs

Avrianna got to go home!!! Boy was it a double edge sword for mom. I am so glad she got to go home but when her lil eyes teared up as she left out the front door....I just lost it when she left. She is so brave and worries so much about her brother. What an angel!! I'm sure the comforts of home and her own bed (or should I say my bed, heehee) will make the recovery process go alil smoother.
Danny was moved to a private room so we now have the luxury life (NOT). His room # is 447 so we just moved one room over, but now I have my own bathroom with shower (don't have to go down the hall to use either one any more), we don't have to deal with a neighbors issues (first one had gone into isolation so I'm alil concerned with what bugs might have been floating around in the room, second one screamed ALL night long, and this last one was a teenager that snored like a freight train. So tonight should be peaceful. They are not doing any labs over the night and they are not doing any RT treatments either so I am hoping he will sleep through the night. We gave him some additional pain meds as his pain is still hanging around (can't blame him for that). We are trying to alter his wheelchair so when we do get the green light to go we have the proper "wheels". They had brought in a regular wheelchair from him to try and I told them NOT IN THIS LIFETIME. There was no seat belts, straps, supports.... it was one of those collapsible wheelchairs you see in a store.....WHAT WERE THEY THINKING! Oh yeah that would be safe, NOT for my boy.
The Hemo team was in to talked about Danny's bleeding issues this weekend, but they really don't have a good grasp of what is really happening with him. They were going to run some other tests tonight and hopefully tomorrow morning they will have a better idea of what is going on with him.
They took another urine culture so by the morning we should have a better idea what kind of infection he is dealing with. I can only hope that with the amount of antibiotics they have him on C Diff doesn't come knocking on his door cuz that will be at least another 7-10 day stay.....and I want to get out of here before Christmas. I don't have the tree even decorated! I am so not in the holiday mood this year.
Well need to tend to my lil man. Thankfully my buddies the Prindles are rooming just down the hall from us so we can have our lil emotional out burst together. Dan took our computer home with him so Brenda is letting me use hers right now. I've never had a hospital experience when a friend was down here too...it's so nice to have that support. Take care!
Please if you still want to get your pictures and messages into Danny's "Touched By Danny's Life" scrapbook...it not too late! Forward them to me and I will get them in the book.

Set Backs

Today Avrianna was discharged, Yay! I have a few prescriptions that need to be filled for her but other then that she is good to go. Her tummy is still soar but she is now getting around all by herself. I need to give her a shower and get her out of her hospital gown yet, but Dan had to boogie out to a meeting her in Milwaukee so we are all chilln out in Danny's room watching Wall-E. They were able to find a TV/DVD player on this floor, YAY! It is very cozy in here as I have all the stuff down here from her room, the wheelchair, all of Danny's things in here, and don't forget an additional tv now. But we are having fun, LOL!
Danny was in some significant pain last night but they just increased his pain meds. This morning was very mind boggling around here. As Dan needed to leave Avrianna was discharged and new news came on Danny. He testes positive for a staf infection, UGH, he has a UTI! So they are going pull his foley catheter and straight cath him now every 4 hours. His lil "boys" are still NOT so lil....they are HUGE and purple, poor thing that has got to be uncomfortable. They scheduled him to go in for a PIC line this afternoon so the antibiotic has a better access point. I'm not sure how long the stay for this is going to be but I know the antibiotic treatment is any where from 5-10days, this doesn't mean he needs to stay in the hospital for the treatment but if his cultures do not get better in a couple days then we will need to stay longer. This will definately be a challange now that one is in and the other is discharged. We'll see what Avrianna wants to do. Some of the blood work came back today that did indeed show he is in puberty, AGH!! What next.....I'm afraid to ask. They don't know if he is in early to mid stages yet until all the blood work is in but they wanted to let me know that he is. I haven't gotten a chance to talk with Hemo yet about the new issues with Danny bleeding but they are scheduled to come in some time today. I believe they are not going to start talking about disshcarge until Hemo comes in as his bleeding issues NEED to be addressed. I will let you all know later what they came up with.

My Brave Babies

Well I sweet talked my mom to go down to the van and get the camera. Here are the great patients....My brave babies!!

Sorry I didn't remove the red eye but look at the whites of her eyes....the are WHITE not yellow any more. Look at her coloring she no longer has that yellow cast to her skin. I am just amazed! Avrianna got out of bed this afternoon by herself and went potty all by herself. She ate most of her lunch (chicken noodle soup, jello, and mandarin oranges) and supper (cheese pizza, fruit roll up and a vanilla shake) so as afterwards we went downstairs to visit her brother.

She is showing off that she had two IV's one in each hand. She said she liked surgery now as she didn't feel anything....but not too much afterwards, LOL.


Here are the six incisions that did to remove the spleen and gall bladder (which by the way we have pictures of before they removed them, so Avrianna is excited to show Dr Kasper them) Each incision is about the diameter of a pencil so the tape just makes them look bigger. (the mark in her inner arm is a tattoo she just had to have before surgery, LOL)

Here she is sitting on MY bed in Danny's room, doesn't it look comfy, heehee, NOT. She got to spring out of her room for about an hour and chill out in his. Notice she is off all IV fluids right now, YAY! I am so impressed on how well she has done today. We've gone from her not even sitting up by herself to getting up, walking around, and eating in just ONE DAY.

She is really upset that she has to take her medicine orally and tends to pitch of fit...boy this is going to be fun. As she is going to have to take penicillin 2 times a day now for many many years to come. I hope this will pass and it won't be such a challenge but as you all know .... Challenge me!!

And on to lil man....ok he doesn't look so lil now, does he?? He still have a few more tricks up his sleeve....this afternoon I went to give him a suppository and when I opened his diaper up "the boys looked like tangerines size and were purple n blue. Again I totally freaked out! They looked like they were going to explode. At the same time I noticed that there was no urine (or should I say blood) out put so the RN tried to flush out the line but within 20 minutes it totally clogged with a blood clot again so Danny is now on his 3rd foley catheter. Paul (Danny's day RN) gave him the suppository too so within 5-10minutes things were flowing out of both ends once again....THANKS AGAIN PAUL!! I don't know if I would have kept my sanity as well if you weren't there for us as a sounding board, advocate, and GREAT care giver to my son. Danny's "boys" are still big and blue (LOL) but they say it is common for that with this kind of procedure....just wish mom knew that may happen instead of me stumbling over it, ugh! It's he so handsome!! The flower pillow lights up so it's a great light show for him when the lights are down.

Here is his brace. Thanks Kacz for making it "just right" for Danny. I am going to ask Kacz to move the belly braces apart more as it is rubbing right on his G-tube. But other then that it seems to be working really well. It is definitely big and cumbersome but it's better then a cast. His surgery was done on just his right hip but they need to brace in both hips to keep the right one in. The bracing on the left side doesn't go all the way down as far as the right on does. I got another set of pads (purple n gray inserts) so if they get messy I can replace and then wash them. YAY!

Here is a closer view. I know the diaper job doesn't look that great but we are working on our technique, heehee. He has pads that rest right up to his groin so this is really becoming a challenge too, LOL. I can open the brace to see if there is any skin break down and it can only be removed if the pads need to be changed....other then that is STAYS on him for 6 WEEKS (better then 12 weeks and a cast!) I thought if I bought really large pants they would fit him, but they have a non removable bar that goes in between his legs so no pants unless any of you have some ideas for me :) So I am REALLY NOT going any where once we are home as he can't wear any pants. I am thinking of getting a small sleeping bag or something so when I have to go out for doctor appts I can slip his bottom half into that, we'll see what I can find. No PIC line was put in today as they couldn't find a Radiologist that would come in to do it....I know TOTAL crap, but I will drag my feet on this one cuz it just another source of infection once in. His labs have stabilized so that is one good thing, but next hour could be different. He is going to see Dr Scott tomorrow (that happens to be Avrianna's Hemo doc too) so we will see what he requests we do.

I believe Avrianna is doing so well she is going to be release tomorrow, but Danny I don't think we are going to be that lucky. I will cross that bridge when we get there with what we will do about one in and one out .... too much to think about right now then to stress out about that. Well that's about it for now. Hope you liked seeing my babies!!

Night of Hell

Last night was very EVENTFUL!! Avrianna is doing GREAT...she was up twice through the evening and walked to the bathroom. Today I got her up, changed her bedding, gave her a sponge bath, washed her hair, brushed her teeth, she walked to the door and back twice. I just ordered her lunch so she is resting now, I'll get her to eat some soup and jello (yum, LOL) and get her to walk down the hallway. She is soooo NOT going to like me for that, but I am using her brother as an incentive, LOL. I am hoping I can get her to see her brother tonight or tomorrow morning. She really misses him and he is having some issues so when I talk to her about it all she does is cry and wants to make sure he is OK.
Now to lil man. Yesterday went very well......until the blood transfusion. About a half an hour after the transfusion instead of urine, blood started coming out of his catheter. I am FREAKING OUT!! Then the catheter clogged from a clot so they needed to pull the old one out and put another one in. Is Hemo count has gone down again so they have another unit of blood on hold for possibly later today. They needed to give him platlets too late last night as his clotting factor was not getting any better. They attempted blood draws again in the middle of the night which was successful after a couple attempts. One of the unsuccessful draw sites from last night started oozing this morning...again FREAKING OUT! Kind of weird how no blood last night and now oozing from a lil hole this morning, so obviously he is still having bleeding issues. He also continues to have blood output from his catheter. The ortho guys came in to change his bandages for the first time and there is some excessive bleeding but nothing to be concerned about (YET). They are scheduling Danny for a PIC line later today or tomorrow so this constant poking can STOP for alil while. My poor lil man! He has been such a trooper with all of this. He is doing much better then I am that is for sure! Stress out is a minor statement!!
Avrianna is so VERY disappointed that she isn't able to see her brother and that she isn't able to watch her movies. Of course now my computer isn't playing movies and they are not able to find a DVD player on the floor. The TWO things I promised her she could do and NOPE not happening. What a mother, hu? She is very emotional today and her tummy is pretty soar, but they took away the IV pain meds and she hates the oral stuff so she will wait till the last moment before asking for it, ugh.
The camera is still in the van and I haven't had time to run out to get it, but when I do I will take some pictures of our lil angels and show off their war wounds, LOL. Take care!

First day of recovery

Today had it's up and downs but for the most part it was progress. The kids are still in separate rooms but we are making the most of it. Avrianna had her Foley taken out this morning so that means she needed to get out of bed. That was a challenge but after 45 minutes she made it off the bed, to the bathroom, and pee'd, YAY!! It is the simple things, LOL. She is getting better and better on every attempt and I am so proud of her!! Tonight is girls night watching Wall-E. She does need to start to eat more (just clear liquids yet) so her tummy can tolerate oral meds as they are planning on DCing the IV pain meds tonight or in the morning.
Danny was doing VERY well all day. Smiles and everything. I am so happy. But this afternoon his tummy and thigh started to really swell, heart rate went up, and hemo count dropped. So as I type he is getting a blood transfusion. Not sure what the on set of this is....but hoping the transfusion is all it he will need to get back on the recovery track. They attempted another blood draw, before they started the transfusion, to see how his PTT level is but again it was unsuccessful and the transfusion was too important to make him wait and poke him multiple times. His numbers were fine this morning and by 6 tonight he dropped down to 7. He is very tired and pale so hoping this pick me up will help.
Dan's dad and Claudia were here yesterday after the procedure and stayed till late morning today. Then this morning into tomorrow my Mom and Aunt came so that is helping alot with running up and down the stair case between floors. We did luck out as they put the kids right on top of each other so I just have to run up or down the staircase and they are right there. So it could be worse. UGH! Thanks for following our family's new journey! I will update tomorrow as I finally got my computer in the room and up a & running.

Day is Over

Well today has been a roller coaster ride. I am so glad this part of our journey is over and the new road has begun.
Avrianna is doing well...Dan is primarily with her on the 5th floor (her room # is 551) She has had some tummy discomfort but mostly with the gas that they had to blow up her belly with (as her procedure was laproscopically done) and getting rid of the excess gas is causing issues with her. She has 6 very small incision on her belly, a Foley catheter, and 2 IV's. She is having the feeling that she needs to pee but they are thinking it is more of her feeling the balloon holding the catheter in. She is using a morphine pump to manage her own pain control. They are looking into giving her more of a constant pain control med as she is up and down alot. She did have to throw up once but I'm sure that is more from the anesthesia then anything.
Danny is having alot of pain issues.......so we have had him snowed pretty much all day. He has three IV's in, Foley catheter, and a very large erector set for pants, LOL. He looks great though! Both kids do! I am mostly with Danny on the 4th floor (room #448) but then run up and down the stair in between Danny's naps. They just repositioned him off of his butt alil so no bed soars show up. His brace is white and purple so Avrianna will be excited to see that when she gets to finally see her brother. I am hoping that they will be able to get the kids together in a room tomorrow but with all the kids around here I am not to sure about it, sigh. This is very difficult for me, but I understand that it could be worse. At least the surgeries went as well as I could hoped them to go! I did have my lil mid life crisis and at one point had 3 dept heads in Danny's room to express my disappointment with the arrangements and the lack of communication once again with the hospital. Yes, I am very ANAL when it comes with the care of my children!!
Well I need to crash for alil while. I will post tomorrow and I will try to take some shots of the patients for you all to see :) Thanks again for your support and your encouragement!!
There is still time so forward your pictures and messages to Danny for his Touched by Danny's Life scrapbook for Christmas!

They are done!

Both kids are done with their surgeries! Both did wonderfully!! Danny did not require a blood transfusion and he is in a BRACE so the recovery time is going to be 6 weeks not 12, YAY!
Both surgeons stated the everything went so well and that we might be able to go home as soon as Sunday night/Monday. I can't beleive it!
The kids have to be seperated tonight (which I already have the "beach" name here)

Children update

10:45 the surgeon just came out for Avrianna and the Spleen is OUT (it was the size of the surgeons fist so it was definitely enlarged). They are repositioning her for the gall bladder removal now so in about another hour she should be going to recovery. She has NOT needed any blood transfusions as of yet, YAY!
I had a falling out the the admin dept as I got the song and dance that they are TOO full to put the kids together and they are looking at putting them on different floors even...I asked how in the HELL can I be in 2 places at the same time and that I don't trust the nursing staff here to leave one of children unattended. I asked her if that was acceptable if this was her children. I told her if they can not get them together look at transferring them to a hospital that WILL. She is getting back to me!
Danny has been doing well and is stable. They were even able to draw enough blood for the endocrine guys (to get results for the early puberty thing). They may need to do a blood transfusion with him as they had to take alot of blood for the endo testing. I'm not sure yet if he required a cast or brace but was told her should be done within the hour too so I will let you know. Anesthesia has been well with Danny this last surgery, YAY!!

Avrianna Update

9:40 Avrianna's procedure is now started. They were able to get 2 IV's in her and a catheter too. Everything went as smooth as it should with her start.
Unsettling new on our recovery arrangements though. Dan took a phone call from the admin dept and they stated to him that they might not get the kids together. Well we'll see about that! I am going to call or walk down to the admin dept now. They can pair us up with strangers but not with siblings......I don't think so!! This is just a pot hole in the road that I need to get fill, LOL

They are IN

It is 8:30 am and both are in their OR rooms. Danny went in first at 8 and that just started the inconsolable crying for Avrianna....she wanted her brother back!! Danny was already sleeping in the holding area so it didn't seem to bother him at all, me on the other hand, I can't even drink a cup of coffee as I'm shaking so badly I'll spill it. Avrianna is scared to death and I am scared for her. She pleaded with me to NOT have this done today. I was able to stay strong and NOT cry in front of the kids, but now I'm just a mess!!! My poor babies I wish I could make it better for them. I would trade placed with them in a HEART BEAT! Both kids have blood on hold for them in the chance that they will need a pick me up. I was told that Danny will probably come out with a central line (which freaks me out even more for a higher risk of infection) in as his poor lil vein just aren't looking to cooperative. Both surgeries will take ALL OF 3 hours so I will keep you posted as I hear. They will come out and let me know when they are both ready to start their procedures. Ugh ~ I am just sick to my stomach. Avrianna was excited that she was able to pick out Danny's cast color in the event he needs a cast instead of the brace. It will be Green and red "accents", she is so good to her brother!! Thanks for keeping our family in your prayers and thoughts, we appreciated it GREATLY! I'm not sure of what room we will be in yet till they are out....I know some wanted to send things to the kids so I will get the room # on here as soon as I find out!
Please keep Danny's good friend Ryan Prindle in your thoughts as he is having surgery also.
Ok ~ just found out Danny is out and they were able to get 3 IV's in him so no central lines as of now. We got the anesthesiologist we wanted for him so I was feeling alil better about him going under. She did mention he is cool his body temp is about 94 right now and they would like it higher but he tend to run cold normally. They are going to let him be and see how he does but if he should start to bleed too much then they will warm him up. The anesthesiologist is going to check on Avrianna for me right now. That was so nice of her!

Pins and Needles!

It has been a stressful 24 hours to say the least here in the Osero household. Last night Dan and I ran the kids to the hospital to get more lab results. I HATE going to this hospital as it has alot of bad memories for me there, but we needed results right away so going there was my only option, sigh! Avrianna needed blood draws too so that in it self was STRESSFUL. She screamed once she knew she wasn't getting a finger poke, poor thing. Dr Kasper wanted to make sure Avrianna was on an even scale seeing Danny's was off (plus he was ruling out another blood disorder he had thought maybe both kids may have had). Avrianna other then the screaming and pleading was not too bad...one poke tons of screaming and done. Danny on the other hand.....5 lab technicians and 2 HOURS later no blood was drawn. I threw in the towel as how much can one lil boy take.....I was STRESSED OUT and he was bruised ALL over!!!!!!!!!!!!! The immediate results were not happening last night! This morning the kids had their pre op appts with Dr Kasper and if he wasn't the lucky one.....3 attempts and a VERY VERY slow draw he (yeap I made him do the dirty work today...he and Danny usually have a good relationship when I comes to getting blood draws) got the amount of blood they needed to run the PTT test again. We went ahead with the day as if the surgery for Danny was going to happen and got everything ready. Danny weighed in at 54 lbs and 41.5" tall today...HOLY CRAP....did someone forget to tell Danny he is only going to be 5 in a couple of weeks. He is definitely going to have to go on another diet....he only gets 2 cans of formula in 24 hours as it is but he is still continuing to gain ALOT of weight, UGH! Avrianna is squared....she is 45lbs and 45" tall....what a peanut. Talk about from one extreme to the other, LOL! We were able to give Dr Kasper his Christmas present today and Avrianna was so excited to give him his gift. Then we went to McDonald's for a quick lunch and then Avrianna had a dental appt. Her teeth are pearly white, but her two rear molars CAME IN with cavities. I didn't know that was possible but I guess so. She will need to go in to have them filled in February and then they are going to put a sealer on her teeth as this will make 3 cavities on baby teeth, sigh. And we ALL know how well she does with shots!! I'm so suprised as she is so good with brushing. flossing, and yes she even does mouth wash. From the dentist we headed to my least fav hospital once again as Dr. Edgar was there today and we had his ITB pump turned up (so he'll be getting more meds to make him looser) for surgery. On our way there I hit a cat in the road so I've been beating myself up for that.....it just came out of no where and I hit the brakes but it was too late, sigh. That's what I needed on a day like today, NOT!! Dr. Kasper called me while on the way to see Dr Edgar and Danny's PTT labs this morning have come down alil. He is in the high normal range but they are going to do surgery still on Friday. Dr. Kasper found out the problem with the elevated PTT levels as Danny isn't getting enough Vitamin K in his diet so we are going to have to supplement him with a pill weekly from now on. So I am so glad we found the source of this dilemma and it was an "easy" fix. Boy that's enough to make me go completely gray, LOL. Planning this surgery for months and days before almost having to cancel, woohoo I could have stayed in Florida if I knew this was going to be so stressful. I did find out today how BIG this surgery is going to be for Danny.....I guess I was naive to think it was simple but with the facts today I found out TOTALLY WRONG! This is going to be huge and painful and did you all know that bones bleed? I didn't till today.....they are going to have a unit of blood on hand just in case Danny is going to need a pick me up. Ok now I'm freaking about the surgery for him too!!!!!! While Danny is in house Dr Kasper wants us to talk with an endocrinologist as Danny is showing many signs of early puberty (AGAIN NOT EVEN 5 YET) so I'm finding all this SO hard to wrap my head around. I'm just spinning and can NOT wait till this is put behind us. In 18 hours we are leaving for one of the biggest life changing events and I'm not ready, NOT at ALL. What to bring what not to bring 4 people 5ish days and what do I expect. I guess we'll deal with whatever comes our way as it comes. Tomorrow the kids go in the morning to get there passports done (we need them for Avrianna's Make A Wish on a Disney Cruise early next year) and then in the afternoon Danny has his IEP. I know can we fit anymore in....I might need this down time at the hospital, LOL! Alright too much to due and not enough time to do it in. And sitting here on the computer isn't helping. I probably won't update again till Friday morning. If I do get some time I will tomorrow but not sure I will. I will let you all know how things went after they are both in surgery so it will probably be about 8ish Friday morning when I get to sit by the computer and WAIT. Thanks for your support and kind words I don't know what I would do without you guys as my sounding board! Take care

Getting Ready!

Sorry I didn't post again yesterday but I was busy NUTS and I still have so much to do. This morning we started our venture back down to Milwaukee at 6am, ugh. The kids were great though! I didn't have enough coffee so you know.....lil pissy, LOL. The appt went well they checked Danny out, went through a series of questions they had for me about him, and then sent him to the lab. WOW they took 6 vials of blood....but only ONE poke, YAY! I think that is a record for them. Everything is set Danny is to be there by 6:30 and surgery is at 7:30 I am to give him his 8am meds at 4:30 in the morning and then nothing more in his tummy. Avrianna got to speak with a Child Life support lady and they gave her a doll all dressed up and ready to go to surgery. They also gave her a bag full of comfort goodies.......stuff to familiarize Avrianna to ie: arm bands, boots, hair net, gas mask (and do you know the kids can pick out the smell of gas like watermelon, bubble gum, strawberry.....that is cool), and a booklet for her to read and color about the operation room. Avrianna liked getting it so hoping now it won't be as scary for her. This is such a different experience then with ALL of Danny's surgeries. Avrianna is scheduled to be in by 7am and surgery for her is at 8am. Both surgeries will be about 3.5 hours. I've been asked where the hospital is for people to send things ..... Children's Hospital of Wisconsin 9000 w. Wisconsin Ave Milwaukee WI 53201 414-266-2000
JUST GOT A CALL *******UPDATE******* Danny's labs are "off "....his PT levels are elevated which means he isn't clotting properly so he has to potential of excess bleeding. I am to go fill a prescription of Vitamin K and give him a one time does and redo labs Wednesday morning. If they go down he is in the clear and can do surgery, but if this doesn't bring it down then Danny will have to see a Hematologist (OK NEVER had to see one of these specialist for DANNY before) before surgery and that won't happen before Friday so they will cancel his surgery. Even if it does I'm sure we'll have to follow up with a hemo doc now, but later down the road. OK can you say FREAKING OUT!!!!!!!!!!!!!!!!!!!!! What next? Is there ever a dull moment here? Another Specialist!!!!!
I got the RV cleaned out and winterized and I got the tree up yesterday but not decorated. I had hoped to get to tree decorated and our bags back for the hospital stay but I'm not getting anything accomplished as I have a headache that is just killing me. I have Steve (the one who made Danny's bed) coming over tomorrow to take his bed apart and reassemble it in my living room, but now not sure what to do????????? My head is just throbbing and spinning with TOO many thoughts.
Avrianna bit into a bit of angel food candy just a few minutes ago and she is now one more tooth less. She is so excited the tooth fairy is coming again. She still has a hole from the last fall out and now this one.....PLUS both her upper front teeth are loose so she might look all funny in a couple more days......4 missing teeth, heehee. I will be playing ALL I WANT FOR CHRISTMAS is my 4 front teeth, for her.
I was suppose to go to a support meeting tonight but with all the stuff I still need to do, my headache, and the beginning of a winter storm knocking on our door (anywhere from 6-14" tonight into tomorrow) I think I am going to pass. With all the excitement here in the last couple hours I'm sure I would be no fun to be around anyway!
I will let you know how things turn out!!
Please forward me your pictures and messages for Danny Christmas scrapbook, there is still time!

We Made It

Just a quick update to let you all know we made it back to Wisconsin last night/this morning. We rolled in the driveway at 2am. We ended up ahead of schedule so we decided to head home and I'll leave tomorrow morning on the road again to head down to Milwaukee for Danny's appt at 6:30am, ugh! The weather wasn't bad till we hit mid Illinios and then we hit MAJOR winds. I had all I could to keep the RV on my side of the road. Other then the winds we really didn't hit any bad weather and for that I am so THANKFUL. Well I need to keep on truck'n with all that needs to get done in this week. I'm beat as to days driving till 2-3 am and only on 5 hours sleep in 48 hours. I guess I'll get alot of R&R time sitting in the hospital this weekend. I'll post alil later today, but just wanted you to know WE MADE IT!
**There is still time to get you pictures in for Danny's scrapbook***

Home COLD Home!!

We are on getting the last minute things done and then we are off, UGH! Avrianna has been pleading with us to stay or too live here as she is not ready for the cold and snow either. Danny has a sad face on so I think he is disputing the ride up North also. Oh well to Wisconsin we go!! Last night Dan and I took the kids to "Bolt" the movie and it was in 3D.....Danny had his first 3D movie. I think he enjoyed it~ and I KNOW Avrianna did, except for the end as things really started to pop out of the screen which scared her. I LOVE animated movies but in my opinion it wasn't one of my favorites.
Good news!!!!!! Danny peed all day by himself yesterday, YAY! No cathing! Hopefully this will continue on the ride home as cathing is not fun AT ALL!
Well got to and wash the floors and the babies, heehee, and then we are off. I will try and post on the way but probably won't have a chance till back in the snow, sigh! Thanks for following our story. Take care!
There is still some time left to send me your pictures and messages for Danny's Christmas scrapbook. It's going to be great!!

Jingle Bells Express

The train ride went very well. I had thought in the beginning it was going to go bad and fast. When I went into the depot to check in they were telling me were to board on the train and then where I should put the wheel chair when he gets situated in the train.....WHAT??? I told them that he can not travel in the train unless he is in his wheelchair and I had informed the women of that when I booked the tickets. So my head started to spin thinking....how am I going to tell my daughter she isn't going on the train. OMG this is going to be bad! The ladies were running around to find out HOW can they get us on that train......they were very nice about it. So they did some moving of things around and WE GOT TO GO...YAY! I was a very nice time. They played reindeer volleyball, sang songs, made reindeer antlers, had snacks and listened to The Polar Express. The kids had fun! The air was cold in the train as I think they were trying to mock winter cold but other then that it was a fun time.

Seminole Gulf Railroad Passenger Train
The inside of the passenger train all decorated for the Jingle Bell Express RideMy cute lil reindeer!!

The conductor and his reindeer elf!

I did forget to bring new batteries so I wasn't able to take many pictures cuz of course the first picture I took the battery light came on, ugh!!

MAJOR ISSUE TODAY.....Mom had a senior moment or I was assuming it was going to get done, whatever or whomever is to blame.......Danny's food bag got left behind at the condo and I didn't notice till the train was ready to leave and we are 45 mins from the condo, OMG!!! I have never never never forgotten his food before, I was devastated and disappointed to say the least. I felt just terrible!! They were handing out CapriSun juice bags for the snack on the train and I had a extra big syringe in his wheelchair bag so guess what he got. LOL! He has never had "juice" before so we'll see what 2 juice bags does to knock his system off whack. Poor thing! He probably liked it but I know how crucial his diet needs to be so this could get ugly!! I hope not and hope that my improvising will sit well with his system.

Danny's last therapy with Ms Becky at Kidspirit went well. She is so wonderful with Danny! I highly recommend them for your child's therapies. Way to Go Ms Becky! We will see you again in a couple of months. He was awake again for the whole session and even made some purposeful movements for her, YAY! He did unfortunately have 2 outburst of crying and 2 other episodes that made her aware that HE WAS NOT HAPPY! I am glad he is speaking of his dislikes and likes but now I'm alil nervous of why he was having discomfort. God I hate it went he can't tell me what hurts!! After therapy he has been back to his old self again so thinking it was just a postural thing but will keep a close eye on him. Thanks Ms Becky for the wonderful gifts for the kids they are great projects that we can do together in the hospital! You will be in our thoughts!

Once again another day of NO PEEPEE from Danny. So that in itself made it the 3rd stressful day in regards to no peeing. I can't wait till I open his pants up and see a blue stripe again on the diaper....let me tell you I will do the happy dance and Danny gets some ice cream, Heehee

Take care and please forward me your pictures and messages to Danny for his Christmas scrapbook......thanks for reminding me Ms Becky to bring in the camera, don't worry I'll get you when I get back, heehee!!

Daddy's on his Way!!

Well Dan should be here tonight around 12:30. He is in the air and on his way! Avrianna is SOOO excited and I'm sure Danny can't wait till he can see is Dad again too. Avrianna was going to try to stay up to see her Daddy walk in the door but she didn't make it. Tomorrow morning will be full of excitement around here let me tell you. Once the commotion settles down we are all going on a train ride. I've never been on a passenger train before so it should be fun....I hope. The ride is about 2 hours long and they have the holiday theme going on.....it called the "Jingle Bell Express". I believe they are going to have a reading of The Polar Express, snacks, and some arts and crafts so it should be a great time. The kids are going to miss out on some of the Christmas things that we usually do in Wisconsin so I thought this would be nice second. We'll see!
After the train ride...I am taking Danny to his last physical therapy session at Kidspirit with Ms Becky....so sad. But not for long, don't worry we'll be back Ms Becky!! Danny was very cooperative today for Ms Becky and he even kept his eyes open for her the whole session this time, YAY!!
I gave Danny a hair cut today so he is all clean and cut. YAY! He still continued to NOT pee today (AT ALL) so I am hoping he will kick start again soon. I HATE to cath my poor lil guy every 3-4 hours all day long, sigh. It makes both of our days longer then it has to be.
Dan is bringing back the camera so I hope to get some new pictures from our train ride on here. I will update tomorrow. Take care
*** Don't forget to send your pictures and messages for Danny's Christmas scrapbook. Send them to my email or email me and I can get you my address. Thanks ***