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

THANKFUL

How Thankful I am that I had the opportunity to spend Thanksgiving with wonderful friends n family! I had a great time and now all I can say is ~ FAT N SASSY :)
Thanks to our TURKEY ~I think we had the best turkey ANYWHERE! One smoked n one deep fried ~ does it get any better people? AMAZING!!!I am so thankful I was smart enough to start the Christmas decorating process ahead of the game this year. I even got Mr Gunner into the festivities :) The inside of the house is complete. With how bad this flare up is effecting me I wouldn't have been able to do ANY decorating if I waited. Smart cookie I am :)

I wasn't able to put my MS flare up at bay with oral meds so I had to go in for 3 days of IV treatment. Once again I prove to be a "challenge" for IV access (I know where Lil Man gets his veins from).

Unfortunately after the 2nd day the IV crashed, sigh ...... so 35 minutes later they were able get one in on the other forearm. I look awful!! The comment of me possibly looking into getting a more permanent site was brought up (possibly a port ~ IV access site placed just under the skin in my chest that is threaded into the veins already) because with my already crappy veins the meds that I take for these relapses just destroy them even more. GREAT :(

With the week of oral meds before and the 3 day of IV I still have gotten NO relief, if anything I am continually spiralling downward. My legs are weak and heavy, this headache NEEDS to go away, I am losing strength in my arms, I have a constant tremor/shake that is just irritating to say the least, my vision is fussy, my mouth is numb and I'm finding hard to swallow things, the pain has started to set in the last few days, and I'm feel very discombobulated. FRUSTRATION! I am going into see my Osteopathic Dr tomorrow for a tweaking and I'm going to be calling the Neurologist so she's up with my lack of response to the recovery meds. I'm not sure where this path is going to take me, but here we go ..........................

I've made the difficult decision to NOT go on our family get away to Florida over the Christmas break. I LOVE going down there, but it's alot of work. I just want to BE part of the holidays as much as I can so we are going to hang out at home in our jammies by the fireplace and enjoy each other. Sacrifices/Change has to be made and this trip seemed to be most logical.

Avrianna and I went to go get our hair cut ..... my hair cut for her worked but it needed to be "helped" out alil. Here's my Lil girl looking all grown up

She's loving the care for it and getting the swim cap on is MUCH easier now tooSo I decided to copy her and get my hair cut very short too :)

Guess I'm trying to look pretty with all these bruises ..... you kind of feel not so attractive with them all over. As I USUALLY have them in at least 7 areas (behind the flab in my upper arms, my upper thighs, my love handles, and my belly) due to this is where I have to give myself daily injections for the regular MS medicine. And NOW on my forearms, sigh :(. I guess it would be a good idea to have a port just for that, not as many bruises.

My latest INK .... touched up and finalized :) I'm so HAPPY with it and proud to show case it off.

My family emblem .... 4 hearts together to make one BIG "O" = orange peace heart (MS symbol for me), pink '02 heart (Avrianna's birthstone color), blue '01 heart (our wedding month color), and blue '03 handicap heart (Danny's birthstone color).

All over the Blue Rose with the statement Cry later.........Smile now

On Avrianna's side ~ I had her footprint that we took at her delivery by a Cala Lily over her flower the Marigold done up in water colors (for my lil fish)

On Danny's side ~ His footprint by a Cala Lily over his flower the Daffodil/Narcissus done up in dalmatian colors (for my lil fireman).

Some people don't get why I do tattoo's (including my husband) but it's my thing. Maybe it's because it a pain that I CAN CONTROL, I don't know that reasons why but ~ I LOVE them :) Especially this one as it has so much meaning to me!

Dan and I went out on a DATE NITE the day after Thanksgiving ~ we went to see The Judd's The Last Encore Tour. What a wonderful evening! First we went out to eat (like I needed more awesome food after the BIG turkey dinner) to Red Lobster, and then to the concert. The music and atmosphere was just what I needed. Thanks Hon! What an inspirational story these two have ~ an not to mention how Beautiful they are ~

We had GREAT seats we were 9 rows from the end of the stage on the floor ~ Plus the two seats in front of us were open so it was CLEAR viewing.

The planning for Danny's Birthday party is coming along wonderfully. We've decided to do it as a Spongebob theme.... the Cake pan came last week :) I even contacted a reporter to the local newspaper (who's done articles on us before) to see if they'd like to do a story about Danny and his friends who've all been "Touched By Danny's Life" :) We'll see how that goes and I'll keep you posted. It looks as if we are going to have close to 30 kids here (10 in chairs, 2 ambulatory, and their siblings) to hang out with us and Santa (shhhhhhh). I can't wait!! We are asking that the families bring new wrapped gifts and/or food to donated to the local domestic abuse shelter in Danny's honor for the Holidays. Danny Loves to get cards and Happy mail so if you'd like to send him Birthday Wishes send them to:

Danny Osero

2686 Towerview Dr

Neenah, WI 54956
I'm just amazed at the positive impacted that my Lil Man has on people and the people we've met along the way..... What a Journey, THANKS for the coming along on the ride! I've got some of the BEST, ClOSEST, AMAZING, LOVING, SUPPORTING friends one could ever hope for ~ but the interesting part is 95% I haven't personally met. All because they've been "Touched By Danny's Life". I wouldn't be the mother or person I need to be without YOU GUYS! I LOVE YOU ~ and I'm so blessed that our journeys have crossed paths.

Whatz Going On

Here's my Babies standing together side by side for the VERY FIRST time ever. I LOVE YOU GUYS!! I'M SO PROUD OF BOTH OF YOU!!It's been an emotionally and physically challenging time for me, lately. I just HURT inside and out. I'm really NOT a fan of being or feeling like this, but it seems to be me. I'm NOT OK with this at ALL .... I'm so sick of change and adapting I could just scream. Why do I have to become someone I don't want to be, just to get through the day? Yeap I'm in another MS flare up, relapse, call it what you will and it SUX so my frustrations have set in. I know ... all this after such an awesome "Attitude" post last time. Believe me I've done my best with trying to keep my attitude up, but not being able to do things because of pain, weakness, and fatigue is really taking a toll. I just don't have the lifestyle for MS and I'm not ready to give up myself to become part of MS. Change, change, change!!!!!!!! I've CHANGED enough but my body is telling me ~ NOT ENOUGH, grrrrrrr. I'm trying to come to a agreed compromise with myself but I guess I'm not doing to well. What a crappy time for all of this ~ well is there really a "good" time for a flare up.....Nope not really. With the holidays and Danny's birthday right around the corner it's especially NOT a good time for me. Thankfully I do have some time to prepare so it could be worse. So I've decided to start ahead of time this year. Instead of decorating the house for the holiday's the day after Thanksgiving I started I week ahead of schedule :) Yeap I'm rock 'n out to Christmas music early too ~ LOVE IT! I usually can get everything done in about a day..... not this year. I'm on day 2 and I've got about half of it done.....this is so frustrating to me. More proof I'm not the person I used to be, UGH! I do have both of our trees UP just one of them is all decorated (thanks to Avrianna ~ she did an awesome job) and the house has started to transformation. I am hoping to have a good handle on it as Monday I will be going in to start the 3 day IV treatment. I was put on an oral med to see if it would have helped to stop the flare when I noticed things were off but ~ NO GO. I'm hoping the IV access is better this time around as last time they wanted me to get a PICC line ~ sigh....we'll have to see.

Danny's birthday party planning is in the works and I'm so excited. Another year ~ WOW! This year we are having an out of state surprise guest coming to participate in the celebrations ..... I can't wait. We've even extended the invite out to MORE of our local "special" guests so with the positive replies I've been getting this party should be the best ever.

When did Life become ~ OK. I'm amazed at the way things have played out in life. One evening, I realized Danny was tugging pretty hard when he took a breath, his color seems pale, and a blue cast around around his lips. I calmly took him in his room and started the "routine" ~ Mr Jiggles, cough assist, breathing treatments and repeat. I sat back and thought to myself ~ When did this become "ok" ........ with helping my son breath on my own and in my own home? Is it ok that this is our NORMAL? You are instructed to head to the ER, call 911, do NOT pass go. To do anything, everything but.......but here I was taking Danny calmly into his own room to go one on one working with my favorite Lil Man in hopes to make him breath better. Thankfully it was only a mucus plug, that just needed some TLC to be removed.

How exciting.....the afternoon before opening day of the Big Hunt 2010 and I get 9 deer in our yard. I didn't get the 6 in the backyard but here's the three in the front.

Yeap here's my BUCK ~ LOL. He looked at me while I walked to the end of the drive about 25 yards away.... what an easy target he was that day. Who says you need to go "God's Country" to bag the big Buck ~ LOL

Attitude

It's ALL about ATTITUDE!

Yesterday as I was waiting to get Danny's Flow Sheets from the printers in their entry was this saying.
"The longer I live, the more I realize the impact of attitude on life. Attitude, to me is more important then facts. it is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church.... a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you... We are in charge of our Attitudes." ~ Charles Swindoll
How appropriate and TRUE! I just had a conversation with a good friend, one of our neighbors from our previous house, about this very thing. How appreciative she was that I do this blog and my up beat twist to all of our lives journeys as it has helped her through her life's journeys. I'm greatful that this site has been not only a tool for myself but that it's a way for others to cope with their things, educate themselves, and a means of support for YOU and I. This blog is serving a wonderful purpose and I couldn't be more happy.
This last weekend Avrianna had another swim meet, this time in Howard Suamico. She participated in both Saturday and Sunday meets. This meaning we had to be up very early so Dan and I could get her there on time (she needs to be IN the water at 7am~ we live about hour away). She did GREAT! Once again Avrianna got a medal :) How exciting! She placed with a ribbon or medal in all but one meet She had NO disqualifications and improved her time in just about every stroke. So she was able to add 8 more her wall. She keeps this up and we are going to have to think of a different idea to display them all.....we are running out of room. I'm so proud of her!!
Our newest addition Gunner started Puppy classes last week too. Yesterday was his second class and he's enjoying his training. He's very smart, but can be alil stubborn (go figure). He's managed to charm the instructors and some of his canine friends already. He's cute and he knows it, LOL.
Danny has been doing pretty good. He's still having his bouts of pain with crying, the lip and tears so I'm anxiously awaiting the results from his CT scan of his right hip and the scoliosis xray that was done yesterday, here at the local hospital. The scan will show if something can be done with his dislocated hip (the one side that has already been corrected but failed) and the scoliosis xray will show if he needs to have his VEPTR rods grown out sooner then later. UGH more surgeries potentially knocking on his back door.
Dan has been a busy bee getting all the seasonal stuff done around the house before the weather turns and before the BIG hunt. Well see if he shoots the deer this time instead of catching just a cold.
I have started another relapse with my MS, sigh. I've had a constant headache for 6 days and I've tried everything to get rid of it. Last night and this morning being the worst... nauseated, vision is blurry and my eyes hurt, shooting constant pain in head and running down my neck, my teeth even hurt, and weakness in my legs. All the meds I've been taking and NO relief. I've called the Neurologist's office twice now to start the treatment, with no replies as of yet. Very disappointing as I have all I can do is to think right now rather then exerting my energy on the phone trying to get in contact with them. If they don't call soon I will just go into the ER, frustrating as it's not in my schedule to sit around and get better.
I had the opportunity to share my story on a new Online Forum for Birth Injuries. They published part of my story in their first issue. Click HERE to go their site, please check it out and join the forum.
Thanks for checking in on us.

Welcome Home Madness

We made it home safely Saturday at 2am, so we ended up sleeping in the RV in our driveway so I didn't have to wake up the kids. Once we got up we intended to let the unpacking begin. BUT as I walked out of the RV in my scrubby clothes, wild hair, and the oh not so fresh smell up drove 4 cars in my driveway. WHAT!!! Well the builder had some people that wanted to look at our house and we had a miscommunication thing going so unfortunately they got to see me at my "finest". It wasn't too bad, they were wonderful people and I got a beautiful bouquet of flowers out of it :) You're forgiven Mike, LOL.
I started my IV treatment for my most recent MS relapse on Monday and today was my last day, thank goodness. The nurse was able to get an IV in my left arm, of course right in the bend (I'm left handed) which they wanted to keep in for the three days as I, once again, was a hard stick. Now I know where Danny got his veins from, sorry Lil Man! Unfortunately the IV blew this morning and they had to start a new one up for today, the last day. After 3 attempts the nurse was able to get on in my right knuckle in between my pinky n ring finger, OMG did that one hurt. But it's done and I'm hoping I don't have to do that again for awhile.
Avrianna is back to the grind in school and she can't wait to get back in her swim suit and go in the pool. I have started to look into signing her up for some summer programs, so she can't say she's "bored" over the summer. But I'm sure once school is out and the pool is up n running we'll be a very busy house.
Yesterday Danny had his follow up for GI and ****GOLD STARS**** across the board. He is finally in a "good" place as GI is concerned, but I did make the doc aware of the up coming surgery to fuse n rod his spine next month which might throw a few bumps in road with GI. As Danny tends to go over board and throw things out of proportion which tends to start with GI shut down when his body goes isn't a dysautomonia fit. I'm crossing my fingers that isn't the case this time. I don't want to spend 70 days of this summer in the hospital like we did last summer. Danny goes in for his Trache/vent clinic and a new patient dental clinic next Tuesday in Milwaukee and then the next week we have pre op with the ortho surgeon and anesthesiologist. Surgery is scheduled for May 14th with a 5-7 day stay, cross you fingers it's not too much longer then that.
Since we've been home the weather has been wonderful so I've been trying to get all my outside weeding and pruning done. It's a month early around here, but I'll take it! Warm sunshine can stay, keep the snow away! It's suppose to rain tomorrow so I'm hoping to get the last two bags unpacked from our vacation and then I can be all caught up. We are having family coming over for the weekend and I have a WildTree Party here at the house on Friday night with family n friends so I'd like to have everything put away.
The MS Walk is on April 25th, boy did that come up fast. If you are still interested in pledging a dontation to support the walk and me please click on the link at the top left of the blog and that will get you to my personal page. Thanks for your support!

Let the Cleaning Begin

We had a great Easter down here. We had "the TALK" on Easter about the celebration of Easter n Christmas and how if you believe then the spirit still rings on. I kind of new that it was coming as she is way to smart for her own good, but it went well and she was ok with it. :) Phew~ that part is over with......now onto PMS, LOL

Avrianna Painting eggs with Danny's Supervision


And Danny Sporting his new sassy T-shirt. Appropriate .... don't you think?


Some pics of the kids .....

Yesterday I started to tear apart the condo. I started in the master bedroom not only cleaning but tearing everything out and reorganizing it. Yeah I can't do anything simple :) I really like the way the bedroom is now and I wish I would have put it this way along time ago. But of course I didn't stop there.......I put Danny's bed back by the master bedroom so now I can be closer to him as I didn't like him being on the other side of the condo because I couldn't hear him well enough. So then I put the two beds in (now) Avrianna's room and she has a huge bed and alot more space. I'm exhausted already and I only have the Lanai, and both bedrooms clean. Now off to the the rest of the place. Once all the bags n boxes are out of here it will look like a condo again. I'm so glad we decided NOT to sell this place, I just love it here, and now I have BIGGER ideas for the next trip down for some more sprucing up :) Everything is packed and Dan is putting it in the RV so once I have everything cleaned up tomorrow we'll be back on the road to WI .... all good things must come to an end. BUT we'll be back you can count on it!

This week has been amazing weather wise. I couldn't have planned better weather ,we are all getting a nice tan. We've been hitting the pool just about every day and going out to eat at least once a day, yeah I know real rough life style. It's been so nice being able to sleep in and not to have any plans or obligations to tend to. Again all good thing must come to an end as Monday is going to be complete and utter chaos at my house. Not only to clean out the RV and put stuff away, school starts, piano starts, I have to go into start a 3 day round of steroids (more on that), and I'm suppose to go to a parent support group in the evening. Then doctor appts on Tuesday for Danny, Wednesday for me, and on and on and on.

I got Danny in the pool.....he LOVED it as always!

Danny chilling out with "His Girls". We met the therapist's that used to work with him when we were down here for dinner. We are now good friends! Thanks for coming out to see us Shauna n Becky :)

Right before we left to come down here my left foot/leg and up to mid mid side went numb. That lasted alil over a week but starting on Friday my right arm and hand are numb and very weak, as I can't even pick up a coffee cup and let me tell you typing is pretty challenging. Unfortunately I couldn't start the treatment while down in Florida as the local hospitals won't take a script from an out of state doctor and the local Neurologist couldn't see me till after we were to leave (thanks to WI doc for going to extra step and trying to get me seen down here). So I'll be starting right away on Monday morning, yea more steroids, better go get the next size up for clothing. Grrrrrrrr! It's very annoying not to be able to feel or use your hand n arm and starting yesterday it's getting painful. This absolutly sucks but I won't let it ruin our vacation!

I am planning an having a WildTree Party on Friday at my home. I'm really excited to see what they have to offer for healthy foods. If anyone is interested in coming email me and I can get you the info and directions to my home.

Please don't forget to pledge a dontation to support the MS walk and ME! Click on the link to the left of the blog page and that will get you to my personal page. Thanks for you support!

Windy State

We made the forever long trip down to FL. Avrianna had gotten off the bus and right into the RV as we were waiting for her at the bus stop. Once the bus stopped I think all the kids on it went up to the front to see our RV, it is was so cute. Off we went at 2:30 on Friday afternoon and Sunday morning we arrived at our condo door around 10:00am. We had anticiapted to drive all the way through (about 27 hours) but then decided it wasn't worth it. The kids did wonderful, even better then I, heehee. After awhile you feel like we're never going to reach the destination. The weather was great on the way down and we didn't hit much traffic except for in Chicago......I so much dislike Chicago!
The weather has been VERY WINDY n cool since we've gotten here but the rest of the week is looking like great weather. I hope that the wind dies down because every time I attempt to take Danny out once the wind hits his face he panics and freaks out. So we've been hanging indoors since we got here....mind you that's in the stores and resturants not just sitting in the condo, got to love that. None the less it's still wonderful here. Avrianna was nawing at the bit to get in the pool so yesterday she managed to take a dip. I was out of the pool watching her and I froze, she's crazy! I hope we can get Lil Man in the pool alil bit while we are down here but it definitely has to warm up and the wind needs to die down before that will happen. I don't need him getting ill while down here. Plus IF he stays well this will be the first Easter EVER that he will be healthy for, knock on wood quick and cross your fingers.
I really missed my girlfriend and neighbor here, it was so nice to see here once we pulled in. She's a wonderful person! Once we got inside I saw that she got goodies for the kids, us, and even had the refrig stocked with beer n dinner. Not only did she do that for us, she cleaned the condo for me. WOW, I owe her BIG TIME ~ LOVE you Linda!!!!
We don't have much planned other then playing each day by ear while here in Florida. I do have to say not having any obligations during the day is WONDERFUL, no appts, school, piano lessons, therapies, etc. The only real plans is no plans at all, LOL. We are going to go out to eat with the Speech and Physical therapists that Danny used to see when we were down here. I'm telling you the people down here are great ~ I LOVE IT!! We do and see so much while we are down here, as when we are in WI we pretty much are home bodies.
Once back to WI we have alot going on. Many dr appts for follow ups and to get him ready for the BIG surgery in May. Plus getting the outside ready for summer, not to mention redoing some things on the house. It will be so nice to not have contractors over ALL the time.
I am once again having a relapse, not sure what has brought this one on, as my mid back all the way down to my left foot has gone numb. It would come and go last week, but for the last 3 days n nights straight it has constantly been numb. They feel like your lip does after the dentist, tingly and prickly. I still have function of my leg n foot right now, it's just a very weird and unsetttling feeling. I've made a phone call to my Neurologist but I'm not sure there is anything she can do for it plus with me being on vacation I'm sure that doesn't help. We'll see!
Please don't for get to pledge your dontations to support the MS walk and ME! You can go to http://main.nationalmssociety.org/site/TR/Walk/WIGWalkEvents?px=7614457&pg=personal&fr_id=13753 to get to my personal page or click on the link to the left of the blog page. Thank YOU for your support in helping me raise money to help find a cure for MS. I can only hope I will be able to see it in my life time. The walk is 27 days away!

Fear of the Unknown

The last few days have been more difficult then I had ever anticipated. I guess I had this misconception of "treatment means recovery". You would assume that with everything else I've dealt with that I would know the cold hard Truth. Treatment doesn't mean recovery and I'm NOT invincible! Hard words to swallow and except, but true. I might not get better, I might get worse....it's ok to not be ok! Unfortunately I have found no relief from my relapse as of yet and sadly I have gotten worse with each waking day.
With the 3 days of IV steroids, 2 days of oral, and I started another Medicine to help with my nerve endings (Neurontin) I continue to have this headache for 10 days now, I have wibble wobbly legs that feel like they are going to give out at any moment, my arms are weak, and my body just aches. BUT I will remain positive that this is running it's course and one day I will wake up regaining some of my functions back instead of losing. This is so unbelievable that I'm finding it hard to wrap my brain around what has all happened ....and in such a short amount of time. Like I don't know how fast things can change, BUT it's not suppose to happen to ME, RIGHT? I'm suppose to be the strong, protective, and nurturing one instead of being the one that is dragging behind.
I've been exceptionally spoiled by having Dr Kasper in our lives for Danny as the "regular" doctor/patient relationship I forgot that exists out there, sucks. So I'm finding my patients running very thin with my Neurologist. Call me crazy for wanting just a phone call back (when I called at 8am to let them know I wasn't doing well) to see what I could be doing. So here I wait over the weekend wondering what I should be doing and getting pissier! The office did call into the pharmacy for two prescriptions .... one that I can't even take as I get sick from it and the other I'm not really sure what it's suppose to do, as again I got no phone call or direction, UGH! I can't wait for Monday's phone call to the doctors office, :) I won't stop here and just wait around so I'm going to start looking elsewhere for a doctor that I feel is hearing and treating my concerns.
I was able to get out for lunch with my girlfriend on Friday. I was so nice to get out and be "normal" for awhile, talk to another adult (one that gets it), and just shoot the breeze. I'm so glad I did as honestly I don't think I could do that today, I've gotten so .... NOT ME!
By Saturday I was very weak, but I signed Avrianna and myself up to go to a 2k walk/run fundraiser for her school. I went but thankfully was able to just sit and watch the kids run around the track, phew! As it took everything for me to walk in to the field house :( Another big one to swallow, sitting on the side lines, isn't something I like to do! Thankfully we had nothing planned for the rest of the day and we sat around the house watching some movies :) Then in the evening Dan and I had some friends over to give me some tips on changing over to a better diet. Guess it's time to step up and take care of myself? It was great bouncing ideas off of her and getting some of her wonderful recipes was a great start. She has fibromylacia (which has some of the symptoms as MS). So with both feet in I am changing to a healthier diet. With the way I'm feeling I'll give almost anything a try. I'm anxiously awaiting some MS books that I purchased online that will hopefully give me alil more direction.
Danny has been doing great! He's been such a good, healthy boy lately (knock on wood)! It's as if he knows somethings up with me, weird? But I'll take it. He's happy and healthy so I'm all game for that. We've gotten Danny on the schedule for his back surgery in May. With talking to his Doctors and some other parents I feel the surgery would benefit him greatly, but I still have a few loose ends that I need to wrap up so I have all the info I need. To make things even more exciting, I've changed Danny's nursing so this last week it's been alil different around here, but I think it's all changes for the better :) Danny and I need more consistancy and dependablity so I'm hoping that we'll have everyone on board, trained, and comfortable before May 14th.
Avrianna has been awesome also! She's been selling Girl Scout Cookies. She has already met and surpassed her personal goal.....YOU GO GIRL! This is her first year and she's loving it. We just got report cards for her and she's AMAZING. She's doing excellent in everything ~ I'm so proud of her! Avrianna has another swim meet this next weekend in Clintonville, where the coaches have her entered in 6 meets. GO AVRIANNA GO!

MS DreaMS

What a reality check the last few days has been for me. Since my Diagnosis of MS, this summer, it really hasn't effected me other then just an increase in fatigue and some added aches, but you all know me I keep on keeping on. Well since Thursday my life has been in a sudden free fall. It's amazing how fast your life can end up in a tail spin OVER and OVER and OVER again and you wonder when are you going to hit the ground. Just when you think you've been through the ringer enough in your life, BAM another mountain we're climbing.
I look at this face and know we are climbing this mountain together more then I had ever thought we would. My New DreaMS !! I am suppose to be the strong one, pulling him through and being his only true one given in life, but this last week scared me to the depts of the deepest hole. How long will I be able to really BE THERE for him? My biggest fan :) I love you Buddy more then you'll ever know.

Here's MY newest hardware..........do to the intense and sudden relapse of MS symptom this last week I have to go to the hospital for three days to get Big Dog steroids via IV and then I will be going on a round of oral steroids afterwards. This will hopefully settle the inflammation that is occurring in my brain and spinal cord giving me my symptoms of headache, blurred vision, body aches, and a MS hug wrapped around my chest. I can only hope that this is just a temp relapse and there hasn't been more permenant damage. My next MRI will show whats going on in there.

It's got me wondering what will be taken from me and when? I had thought I would be Lori who happens to have MS but lately I feel like MS. Once again have been rocked to my inner core wondering if "Can I do this". I truly am scared to death to even comprehend "What else" could my family endure. I know this is really my first experience with the hard core symptoms of MS but I can't help find myself drifting to those questions of WHAT will really be taken away from me with this disease and WHEN. I'm finding out you'll never know till it happens with this disease....one women woke up and couldn't see anymore and another had her legs just stopped working one day. Maybe this would be so much easier to deal with if I was older in age or maybe if I didn't have those two blue eyes in the wheelchair looking at me and depending on me for EVERYTHING. I know it won't be an easy road for Avrianna or Dan to watch me on my bad days and to watch the wife and mother their use to deteriorate, but they will go on, they are strong willed. I can only hope that I can go on living with just headaches, body aches, and blurred vision.......don't take ME away, please I'm begging you. I had someone ask me early on when Danny was born what was I truly afraid of.....Danny dieing first or me dieing first. That was a no brainer....ME first, as I knew he would be taken care of as long as I was around. Now I might be around and still not be able to take care of him....this is killing me.

I laid in bed the other night with my head hurting so bad I thought someone was using a screw driver in there. So am I getting the headaches because I can't focus right visa versa or are they just two different symptoms. I can't take a deep breath as I have this MS hug which feels as if I have weights on my chest. Then my body aches so bad there isn't enough Tylenol in the world to give me any relief. I laid there wondering is this MS or is this something else I should really be concerned about, is blaming the MS the right thing to do. I don't know! Am I have an aneurysm? Do I have a brain tumor? Am I having a heart attack? Will I be ok when I wake up in the morning or will I be very different? Will I be here in the morning?

BUT this is just a bad day with a full relapse so my fears and frustrations are at their peak. I WILL fight this with every sense of my being........because I am a mom of two wonderful children that need me! I need to be strong for their sake. I want Avrianna to look back at her mom knowing I was a good mom that tried to fight MS. This poor lil girl has to see and endure so much in her "normal" life, she deals with her brother being different and a mom who is "sick". Where's the justice in this, why does she have deal with this. She is growing up faster then she needs to, and for that I truly am devastated. Will it make her stronger person? Maybe, I can only hope there is some good that can come out of ALL this.

Today is a NEW day and they are working on cure for this disease everyday, I can only hope I will be able to see it in my life time. Until then I am going to work hard at making my life choices better and try to fight this! I am going to do some research on what kind of diet I can do to improve my symptoms. I will continue to take my medicine and treatments when things get bad. I am Lori who just happens to have MS, I will NOT be MS!

I hear all the time ..... I know so n so who has MS but you'd never know it. I hope I can be that MS person that others talk about, but please understand some days it's all a front and I am just hurting inside. I can't be everything, every time, and I will need help not only physically but emotionally. You my dearest friends and family will be my UP. Please pick me up when I've fallen on the ground. Please pick me UP when my emotions have just crashed. I know I can count on you to be my support and sounding board, but PLEASE don't pity me. I will be strong!!