Wednesday, December 29, 2010

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 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.

Sunday, December 19, 2010

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 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 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

Wednesday, December 15, 2010

7th Annual Christmas n Birthday Party

Wow does time seems as if we'd just had Danny's 6th birthday party, so how did the 7th sneak up on us. Saturday Dec. 11 we held our annual Birthday party/ Christmas party for all of Danny's "Special" friends and their families. Danny's Birthday isn't till the 23rd but I like to throw his party in the beginning of the month so it's not so close to Christmas.
Here's Danny waiting patiently for our surprise guest to his party. Danny was in charge of letting me know when he saw the vehicle driving up the driveway. They MADE IT!! All the way from Scott City, MO
Mattman is HERE! And what a peanut he is. I can't tell you how happy we were to have Matt and his Mom n Dad here. What an amazing family! I've been following Matt via his Caring Bridge site for years. We've attempted to go down to visit them in MO but always had to cancel due to an illness. How wonderful that they were able to come up to us.
Avrianna enjoyed Mattman also :)
Matt and his Mom, Heather
Luckily they were able to come the day before and hang out with us before the party began. It was wonderful to sit around and chat with them.

Here is the first attempt at Danny's birthday cake..........the bottom part of the cake came out of the pan while the top stayed in, UGH! So more cake needed to be made.
The finished Cake.....
Our special guest from The North Pole once again made time in his busy schedule to come to the party as well. We LOVE you SANTA!
Santa had gifts for all the kids that were at the party :)
Really Santa I was good this year...........LOL
Our Friend ~ ELI
Our Friend ~ RYAN
Our Friend ~ MATT
Our Friend ~ JACOB
Our Friend ~ GRIFFIN
Jacob and Ryan were SO EXCITED to see Santa ~ I thought Jacob was going to jump right out of his chair, LOL.
Avrianna hanging out with Mattman ~
Avrianna n Danny with Matt's Daddy Kevin behind them.Danny and his "girls" (nurses) Aleana and Gail ~ Yes Santa they were good this year :)
My sister and her family ~ The Dedering's
Three of the boys hanging out chit chatting amongst themselves ~ Danny, Matt, & GriffinJacob telling Matt a few pointers ~
The party animals ~
The Eakins ~ The whole 2010 crew ~
Too Much Partying ~ They must rest and Chill out :) You really have to watch these two, the apples didn't fall too far from the trees so these two can really cause some trouble when they get together.
Once again and unfortunately there was bad weather the passed through ~ Welcome Blizzard Aiden. Because of the weather (and\or illness) there was about 20 people that didn't come to the party, so needless to say we had alot of food and cake left over because we made 2 hams and smoke a turkey along with all the fixings, for our guests. Despite the weather we still had about 35 people that did brave the terrible conditions.
The night before the party the weather was only predicting about 3-6" in our area.....well when all was said in done we got about 10" and 40mph winds. Not a good combo....especially when your out of state guests need to get home. If I would have known they weather was going to get as bad as it did I would have told them to stay home.
The snow was dropping about 1" a hour. It was pretty to see but the amount of work that was needed to remove it all wasn't pretty. Thankfully I didn't have to go out n shovel. There were
areas that reports 4 foot drifts. YIKES!
Danny's crazy nurse showed up for work (on time) the next that is dedication for you :)
Sporting our new 3E T-shirts.
I was a great time ..... it's always is! In leau of gifts for Danny I asked that they bring gifts and/or food to be donated to the Local Domestic shelter The Harbor House again this year. We got a whole grey storage bin tub full of stuff that I dropped off on Monday. THANKS everyone for helping to make some else's Christmas alil brighter.
Thanks for stopping by to check on us. I will update again tomorrow on other things that have been going on with us. Just wanted to get Danny's party on here cuz I'm already behind. Please sign post a comment we LOVE to hear from you too.
Happ Holiday's

Saturday, December 4, 2010

Happy Holiday from The Osero's ~Our 2010 tree :0)Danny's hand Christmas treeThis year Avrianna and I decided to do a Mini Village Gingerbread ~ it was more challenging then we thought, but here's our village :)
HOLY fire Dan! Boy did it get HOT in our place ~ ahhhhhhhhhh relaxation
Someone is looking at getting coal this year......SASSY boy ~ you are NOT making points with your sister.
Gunner, Grace, and Avrianna chilln out with Danny in his new Pea Pod. Ya they LOVE ya, Lil man!
Two weeks after my treatment and I'm still looking awful and feeling it. *SIGH* I finally hit my breaking point and went into see my primary doctor to pick her brain for options. I still am not improving...... hell I'll settle for being stable. There is concerns with me having multiple rounds of IV treatments within the year and what it's doing/done with my "system". I was sent through the ringer with labs before I left her office but I'm hoping that "if" there is something else to be found ....... they'll find it. We'll see what comes of them. I am going in for another MRI on Wednesday (between Lil Man and my radiology I swear I glow in the dark, LOL) and the doctor wanted me to go in for a dilated eye exam so they can look behind my eyes ~ I am having this done on Thursday. From there ....... we'll just have to see what they find.
Gunner has his last day of puppy school on Tuesday. He's doing so well. I was talking with the ladies that run the class and they think he's a wonderful dog too :) We were chatting about training him to be a therapy dog. I think he/we would be great at it, but I'm just not sure I have the time or energy to do it. That just breaks my heart typing it......not being able to do something we'd like to do, but I need to set limits and right now I can't add anymore to our plates. Maybe someday, but right now we'll have to wait.
Avrianna had another swim meet today. This time in Shawno so we were up at 4:30 to get her in water by 7am. We carpooled with our good friends n neighbors and had a great time together. Avrianna walked away with 2 medals and a ribbon :) I'm so proud of her! In one of her events there was 46 girls competing....see swim away with 5th. What a FISH i have ~ Go Girl GO!
Tomorrow's plan is to start the holiday baking. I am planning making Kringla, Lefse, and Spritzer cookies. The hope is I'm going to find some motivation tonite while I sleep and when I wake up ovens don't fail me now. LOL
Please say a prayer for a dear friend of my Jena Holman ~ her son Ryan passed away yesterday. Something a parent should never have to go through. You will be missed Ryan! My heart, thoughts, n prayers are with the Holman family as they lay to rest their sweet boy.