Do I know my Lil Man?

Danny is great with all his procedures yesterday :). Surprisingly he came up to the room awake, I hadn't planned on seeing those baby blues till some time today. He came up to the room about 6:30pm, on a vent, with out his PCA (pain Pump). So things were a lil crazy trying to get him settled and comfy. Thankfully he has nurses that are already "seasoned" by Danny -LOL. They were/are wonderful with him. Once again it helps ease the admission when you have friendly/familiar faces that know most of Danny's Lil curve balls. Unfortunately we weren't as lucky with the RT and NP at admission/during the nite - so the nite wasn't as smooth sailing as I had hoped but all is WONDERFUL this morning. Once I saw Danny's #1 RT walk in the door I knew things were going to go better for Danny's recovery path. Jackie is AWESOME!! We LOVE her as she knows what needs to get done, she follows through, she is patient, and kind and on and on. With Danny she is His ROCK - RT is so important in Danny's world :).
The med port was placed in Danny's chest for the second procedure. The surgeon said that it was a lil trying to thread the catheter under Danny's clavicle but he was successful in getting it in the optimum spot. Go figure Danny presenting a challenge to the "new" doc. As this is the first time Danny had to be seen by a general surgeon. I know I can't believe it myself, but all the other surgeries or procedures have been done by a specialist. They haven't accessed the med port yet as they left the PICC line still in....it's an access he already had so why pull it until we know for sure the port is going to be a good thing for Danny (ie infection or allergy reaction).... just in case we have access as they tried to get an IV in during surgery and they were not able to.
Then the ENT took a look at his ears once again. They still did not look the best especially the right side. There is still granulmona and scar tissue in the right ear. So Danny got his ears deep cleaned and new hypo allergic tubes in both ears. Once the tube was put in the right side a lot of blood started draining out of it, YUCK!
The day nurse and. Ite nurse was herd in the room when he came up from OR so Danny was tag teamed. It was a good thing as he was a Lil high maintenance once on the floor. From bleeding out of the trache, out of the ears, the wound dressing was filling up with blood, getting the PCA on the floor to get him more comfortable they had their hands full. Danny just loves getting all the attention.
The ear drainage has slowed down a lot and he is no longer bleeding out of his trache :). His incision site is still touchy and along with his blood work being a lil off this morning he might need some blood product to boost him up.
The best news is, he is OFF the VENT. Last nite was awful with Danny being on the vent as he fought it all nite causing more grief then good for him. Danny breathes so slow and shallow when sleeping the machines don't recognize it so it will steal Danny's breath away when he really is breathing...then causing the machines to alarm and on and on. We went through weeks n months of this when they wanted Danny to be on the C/Bi-pap. Once Jackie came in and saw he was on a vent she did her thing got him off the vent, in a matter of minutes and he is resting and breathing comfortably :). It's looking better for sleep tonite-wooohooo. I've been up since 2am so it's a Jammie/nap day today...visitors beware -LOL.
I feel a headache coming on.....can't imagine why? So looks like my nap time is near!

Our Craziness :)

Just wanted to share with you.....my favorite swimmer! I'm so proud of her :)
Ive posted some other of her events on Youtube also if you'd like to take a look.
Avrianna has been entered into an 8 and under All Star swim meet in Whitewater, WI Feb 13th which should be a wonderful time. Then the next weekend she has her last swim meet on Sat & Sun afternoon in Fond du lac. Then the next season Avrianna will be put in the next swimming level ... SILVER. She's very excited about that, but still wants to take a "break" for the summer with the team again, so she won't start back up with the team until next Fall.

Here she is sporting all her metals, ribbons, and trophy in front the the board Dan made for her.Avrianna is selling Girl Scout Cookies again this year.....yeap it's that time again. So if anyone would like some let me know. Even if you have too many already or if you don't care for them (gasp) you can donate boxes. Avrianna has a fellow GS who's uncle is going back over seas to Afghanistan for his 2nd tour and we are going to donate cookies to his platoon. Come on guys, lets support the Girl Scouts and our troops :) I know I would make an awesome sales person, just ask Danny's Nurse, LOL.

I decided I needed a new look once again....

BeforeAnd After the color and highlighting ~ I did myself....not too shabby :)Then I treated myself to a very over due hair cut last night.Yeap I went even shorter....again. But I like it :)
Of course we had to highlight Avrianna's hair too....so cute!Danny has been fighting off a double ear infection.....gotta love seeing this, NOT!I took him into Dr Kasper's so he could really clean out his ears as they were very goopy. I think it helped so he is currently just on ear drops. We are trying to stay away from oral antibiotics as much as we can because they really do a number on his system.

This is GROSS!
But No One seems to know what the heck it is. We've been getting this goo out of Danny's tummy a few times a week. This coming from a boy who eats nothing.....and doesn't get anything purple. So.................? Go figure Danny throwing us another puzzle.

So I received a phone call from the Neurologist's nurse....stating the EEG shows NO seizures and the doctor thinks his seizures are being controlled properly. UM....then what is going on with Danny? I asked her what does the Dr think....of course no reply. UGH! If you'd look the definitions and actions to a typical Tonic Clonic (Grand Mal) seizure ~ he's having them. So if they look like a seizure but they are not......what the heck am I suppose to do? Another appt will be in the making, you can bet on that.

This would be the single Lumen Power Med Port that was implanted in my chest. Looks like a mouse....and it's purple ~ LOL
They did NOT knock me out....I was up and talking with them the whole time....DARN! But I did enjoy NOT puking afterwards. They didn't send me home with any pain meds. Just to take Tylenol for discomfort. Now I'm a tuff cookie, but the first 48 hours would have been wonderful to have some pain killers. OUCH! I was swollen in my chest, to my under arm and up over my shoulder. YIKES!

The first night
By the second nite I had to take off the tape and gauze as....Danny and I must has the same sensitivity to tape. I got hives and my chest turned fire red. And Itch! Let me tell you that ice, neosporin, and benadryl were my best friend. You can see the bruising was turning green, eekI got to take the stitches out and it felt wonderful!By the afternoon it started to split open
And by the nite.....it the opening got bigger! UGH! I had stery strips here and tried to close it back up but no go. I reacted to that also.
I can't wait to start up my new med. As I've really been aching and getting weaker. Plus this headache that I've had since the end of November REALLY can go away! This all SUX! I can't tell you enough how much I HATE MS :(

Dan's test came back from his cyst and all was good..... not skin cancer, phew! Last Sunday morning Dan was going to let me sleep in and surprise me with breakfast as Avrianna was at a sleepover, but things didn't go as planned. All of a sudden he was bent over and in so much pain he was shaking. He gave me a kiss and said see ya later.....UM, where are you going. "TO ER" Well you know it's bad if he's going to go to the ER and it must be really bad that he is going to drive himself in, as he couldn't wait for 10 minutes (at best) for the nurse to get there so I could take him in. Off he went and I got myself presentable so when the nurse got there (about 5 minutes after he left) I was off to find him in the ER. I wasn't far behind him and they were just finishing taping the IV down. They gave him some IV pain meds......that didn't work, so they gave him another dose....that didn't work. By this time he was shaking so hard you'd have thought he was standing outside in his skivvies. Then they changed the med and he finally got "some", not all, relief. Off to get a Cat Scan he went........the verdict, a 3.5mm kidney stone finding it's way to the bladder. YIKES ~ but now he knows what Danny had to go through :(. Heavily medicated they sent him home to me to deal with, HA. Luckily he slept ALL afternoon due to all the meds he was on. He woke up, had to pee, and WALL"A the stone (his baby boy as he would put it) had been passed. UM ~ that little piece of rice WITH drugs doesn't compare to the 9lb 3 oz bumbling baby boy WITHOUT drugs, so NO sympathy here. But he's as good as new, heehee. That my friends bought him a referral to a Urologist. Unfortunately it was a useless appt as the pathology test of the stone hadn't come back yet. So depending on the results of that will matter on what, if any actions will need to be taken.

I had to go in for a follow up appt with Endocrine from my Thyroid....remember all the poking! My blood work still isn't great, BUT not bad enough for the doctor to start to treat me with meds at this time. I fluctuate with the different MS meds so much that he's just going to keep a close eye on me. Well with the port in the blood work won't be so bad now. I did go in for another ultra sound on the growth that I have in my thyroid and it has grown but not significantly as again .... close eye.

NEVER EVER A DULL MOMENT AROUND HERE!

Yesterday was the post season Packer/Bear game. I don't get into football, but when the Packers play the Bears especially in a occasion like this we try to have fun. Dan is a .......Bear fan ( I know, I know... I try not to hold it against him) which he's converted my son. Now that's just not right. As of yesterday Danny is now grounded for a week cuz......
You get the picture....but he's still so damn cute. Danny that is ~ LOL

So of course the girls need to be be on the opposing end.
Yeap ~ this is me in my comfy cozies. Thanks alot Avrianna, LOL. Yes I have a Farve jersey on...I am NOT and will NEVER be a Farve fan, but this was the only jersey I have. As I put it last nite...... Well Brett #4 Packers + #4 Jets + #4 Vikings = #12 Aaron Rodgers, Ya Baby! Super Bowl 45 here we come.

*WARNING* The National Weather Service has issued a Flash Flood Warning for Chicago and surrounding areas for Sunday the 23rd of January. This warning is NOW in effect. This Flash Flood is caused by the tears of Chicago Bears fans as they saw their Superbowl dreams fade away. Crying will intensify now that the game is over.

Our new mailer postcard Advertisement for the Laundry.....Check it out on Wash Wednesday $1.00 off the 30#-80# washers ALL DAY!

Thanks for checking in on us!

Where to start with the New Year. There has been a lot going on in the Osero household. Which is why I've been such a slacker on here. Sorry :(.
We laid low once again for ringing in 2011. A very good friend of ours came over for a tenderloin dinner and then a movie. I had actually thought I might stay up to watch the ball drop (well the New York ball) as Avrianna wanted to see it. When I went into her room at 10:30 she was out cold so ...... I got to go to bed too. Guess what.......the new year still came even though we were sleeping, LOL.
Danny has been having more "seizure" like activity, so he did have a 48 hour EEG. I believe we got some good activity while the EEG was on but now we just have to wait to hear what the report has to say. Danny was such a trooper with his head all wrapped up but by the end I could tell her was done with it. Nothing tends to go smoothly so far this year and to start it off was .....what we saw once the gauze was removed -Yikes. He had soars n blisters on his forehead and hair line. We're it sure if it's from a reaction of the chemicals that were put on him for the wires to stick or if the wrapping was just on is head too tight. Either way I'm not impressed about it. Danny had a bone age scan done, which is just a X-ray of his hand and then it gets sent in for it to be compared to others, showing what his bone size is ........... Danny's bone are that of a nine year old. He's testastrone levels also came back not average for his age. A 6-9 yr old boy should have levels between 10-25, Danny's was.......a jaw dropping 179 ( just about an adult males level). It shows as he has his manly hair growing. I had said I would let his upper lip grow soil more and then laser it off so we didn't have to deal with anymore and I still have my baby face still. Dr Kasper disagreed with me and said he thought Danny would look good sporting a go tee. UM, no not at 7. Would someone tell Danny he IS only 7 so he need to stop growing up so darn fast!
Dan had to have a procedure done in the clinic to remove a cyst like thing on his head. The procedure went longer then we thought and the cyst was different then what the Dr had thought so the Dr has sent it pathology .... Now to wait and see what comes of that. When Dan goes. in next week to have the sticthes removed they will go through the pathology report with him then. When we were waiting for Dan to go in, I ran into the lab to get my thyroid test redone because the last time I took has it done it was the lowest it has ever been. The theory is it was so low do to me being on the iv steroid treatment for my relapse. Well after three pokes and now bruises were able to get enough blood to run the test.
Avrianna had a swim meet in Wausau last weekend and she rocked IT. She had 8 events and placed in all 8 of her events. She improved on some of her times and received her first trophy EVER for swimming. It was very exciting and I'm so VERY proud of her. We made it a girls weekend and just us girls went up to them leaving Dan and Danny to do some one on one male bonding time. It was nice for all of us, but I have to admit it was very strange not to be around Lil Man for the night. it been years that I've nit been with him a night and I can count on less then one hand the I've nit been there with him at night. I was feeling alil lost but we all survived :)

Avrianna holding her trohpy proud..along with her friend Evelyn, Grave and Lauren
Her trophy....she placed 6th on her age bracket for the whole weekend :) Way to go Avrianna!Monday Danny had to have his ITB pump refill so we went up to Green Bay. Once there we found out that the process has now changed and Dr Edgar no longer refills the pump his nurse does. I was bummed to say the least as i was hoping to hit him up on the EEG that was done to see if he had seen it yet plus i just like chit chatting with Dr Edgar. After the second attempt at poking to find the port access and Danny getting upset I requested the nurse to get the Dr so he could do it. Danny was very upset as the nurses was really fishing to find the port so much that she bent the tip of the needle, grrrrr. Why is it that people think that if Danny can't be heard and because he can't flail around like typical children they must not be in pain. The little boy is a living, breathing, feeling, human and MY son so act like it! One shot and Dr Edgar got the needle right where it needed to go :). I did ask if he read the EEG yet and he hadn't but he said he'll get out the large pot of coffee and take a look. We did go through some options of different meeds for me to look into IF www felt there needed to be w change after we see what kind if activity is going on. Once it was time to leave Danny really started to go to the ugly cry....crying over the trache and he was heard loud in clear, then the lip....yeap it's back and he knows how to use it. Ugh- didn't help me keep my stress level down i can tell you that. So we went out to eat (yeap I had to share my strawberry smoothies with him) and some retail therapy.
Yesterday I had my follow up appt with my endocrine doctor for my thyroid which was pretty much a waste of time as the labs that were drawn where never processed so he didn't have any recent number to go by so........ You guessed it back to lab. 5 pokes later and a very large hematoma in my hand they got blood, grrrrr. I was pissed to say the least! My numbers are still low but not as low as before :). Next week i go back for an ultra sound to see if the growth in my thyroid is getting any bigger and the i go back to see the Dr to go over all the findings.
Tomorrow bright and early I go in for surgery to have a med port placed in my chest. I'm not sure where they are going to find a vein to put the IV in but I hope they knock me out curtsy before they start digging as I'm sower ands bruised all over my arms n hands already. I am really looking forward to taking a good nap but not so much the puking afterwards as I always get sick after being put under. We'll see how I am feeling and if not too bad I will post on how things went
Thanks for following us!

Out with the Old In with the New

Christmas in our house was AMAZING. We spent our time together in our jammies, snacking the day away, playing with our new toys. It was wonderful not to run here n there with the holiday hustle n bustle. This tradition was put in play in 2008 when the kids had their surgeries in December and they were not healthy enough to go out for the holidays....and I LOVED it then. So....this will continue. It's all about the kids anyway, so why not let the older generations run around to the kids. Plus lets face it, it's not that easy to come n go here n there with my family :)
I can't say I'm disappointed to see 2010 in go, but I can say that I have high hopes that 2011 will bring better things for us. We are ending this year with most of us "on the mend". Dan was not himself over Christmas.....not pukey but very lethargic, Dan taking a nap multiple times a day, UM yah something is up. So I made a phone call and he was able to see the Dr Monday afternoon. He came back being on an antibiotic and they did lab work. It's never good when the Dr calls the next day (while he is on vacation) at 8:30pm to let Dan know he's very sick. I guess the cultures grew immediately, and his blood count was 20K. Now if you see him you'd never know he was ill, but that's Dan....LOL. As long as he continues to "feel better" on the antibiotic he's good to go. Everyday he seems to be better so we'll see how that goes.
Danny has been hit with the seizure monster lately so he will be having a 48 hour done starting on Monday. We will be heading up to Green Bay on Monday the 10th to see Danny's Neurologist, Dr Edgar for a ITB pump refill so hopefully he will have a chance to look at Danny's brain images before the appt. Then we can figure out what's going on in Lil Man's head. All I know is I hate the feeling of helplessness when he's having one as it looks so painful for him. It just breaks my heart :(
Danny's VEPTR rod lengthening has been rescheduled for April 1st -ha I hope that isn't a joke. This will buy alil more time for his body to recover still from this summer's surgeries and for him to grow some more to make the surgery more worth while.
I have been playing phone tag and having issues with paperwork with the doctors offices to schedule the med port placement. I'm hoping that after the contacts I had today that things have been taken care of and start to progress into my next journey. I'm not sure how long it is to wait to get the med port placed, but I know I can start the new med after the 17th of Jan as that will be the 30 days that I've been off all of the other MS meds that I've been on. So we'll see what happens.
Avrianna has been....as she put it a "sleepover DIVA" ~ LOL. Since Sunday she's had someone sleepover or she's been sleeping over at someones house. She's been a busy girl :) Thankfully she is healthy (I'm knocking on wood right now, as I hope I didn't jinx myself). The weather has been wonderful for winter break so she's been playing outside alot. Burning off more energy..... I think last night was the first nite in a very LONG time where she asked if she could go to bed because she was tired ~ LOL
I hope that you all had a wonderful Christmas and have a Happy n HEALTHY New Year. Thanks for stopping in to check on us.

Much Needed Updates

On Tuesday the 14th we took a trip down to CHOW for some follow up appts on Danny.
The first one was with Dental. He had only 3 teeth that had minimal tartar to be removed and then he got his teeth cleaned. What a trooper Danny was :) and cudos to the nurses for maintaining great dental hygiene....gold starts for having a great set of teeth for Lil Man. He wasn't too impressed with getting his teeth scraped but he recovered well. It was a great appt, just another cleaning in 6 months. He does he 2 more teeth that are loose but not loose enough to be pulled at this time.
The second was Danny's pre-op for the rod lengthening in Jan. This one was pretty easy, just vitals and look at the MRI images that were taken about a month ago. We talked about the procedure and if it was even needed at this time as his curve didn't move since the revision VEPTR surgery in August. I remembered one of the questions, when I was considering the VEPTR, was how did they know he needs to be grown? The answer I got was when the curve increased on the images. Well his curve is stable so why grow him out? I know "protocol" is to grow out every 6 months BUT if it's not needed then why do it? Danny's dysautomonia (a disorder of his body not reacting the way it is "suppose" to automatically) goes so out of control when he is put under anesthesia. So I left that appt very confused on what I should do and what were that right options for Danny.
Then it was break time.................Lunch at The Cheesecake Factory,.YUM ~ Life is good! I had all the comfort foods and then....of course CHEESECAKE. I mean how can one go to The Cheesecake Factory without eating a piece of cheesecake. I did share the Kaluha Coco cheesecake with the nurse because I was so full from the main course, so it wasn't too bad (with the weight watchers points, LOL).
Back to the hospital for our last appt with Palliative Care and Rehab. I couldn't wait to see them. These two Doctors get the WHOLE picture with Danny, not just a specialty. PLUS we haven't seen Dr Klingbiel in a long time as Danny was being seen by another Doctor in rehab that was also taking care of his baclofen pump. She is now gone, Danny's neuro is back taking care of the pump and we get to see Dr Klingbiel again, Wooooowhooooo! I LOVE these two Doctors, they make our stays in the hospital and the cares between all the specialist alot more bearable. I know they got my back and understand the whole quality vs quantity. I don't know what we would do without them in our corner. I informed them of the findings at the pre-op appt and BOTH of them are on the same page I am. PHEW! So I canceled Danny's surgery in Jan and I will have xrays of his spine in Feb when we are down there for other follow up appts to see if he'll need to be grown out this spring. I'm all for not putting him through surgeries IF they are not needed. The only disadvantage is that we were going to have an injection done in his hip to see if that helps with the pain Danny is having. They did increase Danny's baclofen pump ever so slightly in hopes to decrease his spacticity and spams and that will make his pain levels lower. Changing the pump is so easy, so why not try it, right. If it doesn't help then we know and can switch the pump back to it original settings. We'll see!
Unfortunately the seizure monster is back. Danny has been having alot of neuro issues lately and at times his oxygen levels even decreased.....NOT COOL! So you can bet that Danny just bought himself an EEG in the near future. We'll see when we can fit that in this Holiday season.
I got my Lab work and MRI results back last week. NOT so good :( BUT my eye exam went well, the MS has NOT attacked my eyes other then having the side effects of my headaches through my eyes, PHEW! All my labs were "off" but most of them are being blamed on having the IV treatment being the culprit of that. So I am going back in on Monday, for more labs to make sure I am back in "normal" limits as well as a more tests. The MRI I had done did show 3 new "hot spots" or lesions (1 in my right frontal lobe and 2 in my left frontal lobe making it a total of 7 now) so what I'm going through is indeed a full blown MS relapse, sigh. Then with being on the IV treatment to help with the relapse symptoms it did make my system feel even worse because it dropped my thyroid function more (which is already working shady), it increased my sugars (which I'm already at risk of being diabetic), and my blood pressures have been way HIGH. The headaches are coming from the lesions/soars forming in my brain. With me not improving after the "treatment" and the lesions not settling down (they glow when they are active on an MRI, hence the "hot spots" meaning they are active at that time. When they are not so bright they are not active.) after the treatment I've been up graded from relapse-remitting or remitting~progressive ~ which means that disease is taken hold and I'm not going back to "normal" after a relapse, I continue to deteriorate. SO........the decision was to switch my meds in hopes we can put this MS in REMISSION instead of the path it looks like I'm taking. With the change comes the risk, there is NO EASY answers with having a disease without a cure. You either let the disease kill you OR you could die trying. I have to give it every effort to make myself better! I am going to be going in to have a med port surgically implanted in my chest so I can start a medicine that will be given by infusion. BONUS is no more daily shots that bruise and sting like crazy. I will be going in once a month to the hospital to have the med done via my port, it should only take about 1 hour to give and then I have to stay another hour to make sure I don't have any immediate reaction. So that will be nice only 2 hours a month. This med has done wonders with shutting the symptoms down and not getting anymore lesions. I'm crossing my fingers it works. BUT it comes with added risk...one being infection from the port and the BIG one is the possibility of getting a brain infection that could be fatal or cause severe disability. No stress there, AH! The only good thing is that they are aware of it happening and they monitor you VERY closely. So I feel somewhat better about the situation, but I'm still alil edgy about it. I'm not sure yet of when the port will be done, but I have to wait to start the new med until I've been off the old one for a month. I stopped taking my meds as of yesterday, which is scarey in it's self with being in a relapse an now NOT being on any meds, I hope I don't any worse.
I am officially done with Christmas shopping AND wrapping. CHEERS! Bring on the Hohoho and the hot toddies. I'm ready! I'm still bummed about not being in Florida for the Holidays but I am looking forward to hanging out with Dan and the kids in our jammies playing with out new stuff :)
This week is full of events for me. I am going to work at Avrianna's school holiday store for a few hours tomorrow morning, then Tuesday we have Avrianna's Brownie Christmas party that was cancelled last weekend due to Blizzard Aiden, and then I have to help out and cook a dish for Avrianna's breakfast Christmas party in her class on Wednesday. Thursday starts Winter break so Avrianna will be home till Jan 3rd :) Not too mention all the medical crap between Danny and I. I have labs and possible port placement...Danny has his yearly physical with Dr Kasper. Then ahhhhhhhhh the holiday's, it's so weird knowing we don't have to go anywhere or do anything (as we used to run all over the place) and we can relax. I can't wait!
Thanks for following us and your support. Words can NOT express how much you and your support means to us.
Please have a Safe and Happy Holidays! From The Osero's