Tuesday, March 30, 2010

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!

Wednesday, March 24, 2010

Wrapping up

Danny just had a 48 hour EEG done as the doctors feel he's "pain" might be seizure episodes. I hope they got enough information so we know what's going on with Lil Man on a daily basis. They want me to increase his meds once again, but I'm now in the prove it mode. His liver functions have gotten all out of whack with these meds before so I'm not too excited about increasing them unless we come up with some proof and possibly other alternatives. My fear is if we start screwing around with his liver functions now and if he should need to be back on TPN after his spinal fusion/rods in May we've just added fuel to the fire as TPN also effects the liver. UGH!!!
Here is his dread locks of wires, all 25 glue to his head with glue that's "better then super glue". When they flatten his hair up you really can see how small is head really is. The top is so small because his brain doesn't grow so there is nothing pushing out the skull. I have infant hats that fit!

This time around they gave him a bandana to wear around the bandage holding all the wires in place. Now instead of getting the looks as if he had brain surgery they think he's had chemo. I just want to have a sign out saying there are wires glued to his head .... that's it no biggy! Here he is so cool........ready for Harley ride, I think.

After washing his hair of all the glue....well I thought I got it out. It still looks as if I dipped his head in white paint. I'm going to try to wash it tomorrow with baby oil and see if that helps get the glue out, UGH!

We had Avrianna's conferences with her teacher this week. She is doing so well and just shining in school. I'm so proud of her! Her teacher says she's a model student and that she a joy to have in class. Boy does she have them all fooled, LOL. I can't express enough how happy I am that she is not only doing so well but enjoying school. She is also excelling in her piano classes. I'm in awe of the music she can play and how awesome it sounds. Danny just LOVES listening to her play so I think that's an incentive for her :) She's a great BIG sister!!!
It's approx. 72 hours and we'll be in the sunny state for some much needed R&R time for the Osero's. The bags are packed, the RV is almost ready, and we just have to get the odds n ends things together on Friday. I'm to the point with packing up Danny's equipment and supplies up where we need wait till the day we leave as I use it daily. It's been a year since we've been able to get down there and we ALL are excited to get there. It is going to be so nice to have no plans, no doctor visits, no therapy, no nursing, no contractors......just US. With the economy we've decided to hold on to our condo and see if it's a better idea to just rent it out once in awhile and that way we'll always have a place to go to.
Dan's getting ready for racing as when we get back he will be in full force. So the car is getting it's tweeks and repairs done so once the track is open he'll be ready, set, go.
Please don't forget to pledge dontations to the MS walk I'm doing in April. Ever little bit helps so please support the walk and ME. Click on the link to the left of the blog page and that will get you to my personal page. THANK YOU!

Monday, March 15, 2010

Looking UP

Well things are looking up in the Osero household :) We are ALL healthy (hear me knocking on wood). I have started to pack for Florida so I can only hope that we continue. BUT we have decided to sell our condo in Florida as keeping if for us to stay there 2-4 weeks a year just isn't feasible. Even though we won't have the condo there we'll still stay in that location for our vacations. It's such a nice area!
I can honestly say I am back to "normal" and the relapsing symptoms are in remission, whoohooo. My second round of labs have come back still with borderline hypothyroidism, which explains alot of the other symptoms that's been going on, SO I'm so glad I decided NOT to blame everything that is going on with me on the MS. I need to go in a redo the labs again in three months! It's amazing how great you feel (even when your not 100% yet) when you have felt so yucky for so long. I am going to see the DO doc again tomorrow and I'm looking forward to another back/neck treatment. I got the call today from my neurologist that the brain MRI I had last week does not show any new lesions on my brain. Whoooohooooo, Yeah me!
Danny is doing well, I guess. Unfortunately he has been having issues of pain lately, I can't pinpoint it yet where it's coming from. This is heart breaking for me to see my Lil Man just crying out and I have no idea where it's coming from or why. Today we had our new nurse start today, and she's going to be a great fit for our family :)
Avrianna is loving that the weather is warming up around here and the snow is gone. She is getting outside riding her bike n scooter and roller blading. Which makes it alot quieter in the house, ahhhhhhhhhhhhhhhhhhh.
Talking about houses we were very lucky to found a lovely family for our old house before we even put it on the market. Another thing off of our to do lists. I'm so glad we don't have to worry about maintaining it for the summer. I'm going to miss that house.....I had really hoped that the house would have worked for our family and lifestyle longer. Our house now is getting a big spring clean as we cleaned ALL our linens, blankets, pillows, and with having the window open here in there we are slowly getting the winter blahs out.
Don't forget the MS walk I am participating in the end of April.....please sponsor me and pledge a donation. Every lil bit counts! You can click on the link in the upper left hand of the blog to my personal page. Thanks!

Wednesday, March 3, 2010

Osteopathic wonders

I think I've got a good start to MY medical team, weird that I have to have my team now too. WOW is this exhausting, but it feels good to have a start to this process. Yesterday I went to see a D.O. other wise known as an Osteopathic doctor, still stumped? Cuz I was as I had no idea what kind of doctor they were, LOL. With the research I've done and after my appt with the doctor I can tell you that D.O.'s are a cross between a family practitioner, chiropractor, and homeopathic doctor. This doctor I felt REALLY listened to what I had to say and heard all my concerns with this disease and my forever depending lifestyle. I really left there knowing that this doctor is going to be a GREAT fit with how I want to tackle MS and live my lifestyle with more of a natural twist to it. Which is awesome as I don't want to be pumping my body with any more medications that give me out of body feelings. The doctor cracked my back and neck in ways that I was scared to even move and I had thought I'd never be able to move again. I can't imagine any ones body cracking and popping like that without permanent damage, LOL. But I walked out of there hoping for the best and anxiously waiting for positive results. I can honestly say the pain that I had in both my legs that last 4 days is almost gone today :) I can only hope that this is the start of something good for me. Tomorrow I have to repeat my labs as the ones I had I had done last week with my family practice doctor, as I couldn't take the pain anymore so I went in hopes she had some ideas for me, came back showing I have hypothyroidism. My thyroid levels are low and it was followed with low blood sugars. We'll see what tomorrow's labs come out as to see if it's confirmed or not. Now if I could only loss weight like you are suppose to with a hypo thyroid, LOL. Then on Friday I will have my first appt with my new Neurologist, which I've heard only POSITIVE things about her. I'm so excited to meet her and get her "Plan" with helping me. I will have in toe my timeline of the issues and concerns I've had the last month with the MS relapse and the way that the old Neurologist handled things. I can only look forward to a better positive tomorrow :)
The kids are doing phenominal!!!! Only real issues was when Avrianna's face met the snow ice hill this weekend which has left some road rash up her chin and upper lip, thank goodness we don't pictures in the near future, LOL. Avrianna is finished with her swimming and it's a nice change of pace around here to NOT have to go somewhere every day of the week. Danny is happy n healthy which make me alil nervous even bragg'n about it.
We are anxiously awaiting our trip to Florida on spring break, but we are still on reserve as we know all too well how fast some of us may get sick and then plans change once again. BUT lets not dwell on the what if's so we are going to plan like we are going to enjoy the sun and warm weather.