Wednesday, September 24, 2014

September Celebrating

September is our month.  Let's get the celebrating started!!
Dan and I went out for dinner on our anniversary. 13 years - wow!  I have to say there was a time I wasn't sure if we were going to make it, destine to become a statistic.  But seeing where we are now I'm so proud of the partnership we have. Are there days that I'd love to strangle him?  Well sure. We are far from perfect, but we compliment each other well. I couldn't see sharing this life with anyone else. We've grown together in many things. With everything that life has thrown our way we've managed to stay afloat and become stronger.  I'm sure that life isn't going to be chocolates and rose petals but whatever comes our way we'll take it on together. Here's to many more years as husband and wife.

Once again MS  has shown it's ugly true colors. I found both of my legs n feet completely numb to the touch, but inside it felt as if I was standing in a bucket of ICE cold water. That it's so cold it burns and aches feeling. Irritating to say the least, but thankfully I never lost function   I have to pay more attention when I walk as I found myself tripping more due to the fact of me not knowing where my feet are. The numbness moved up to my hips so my bum and such where numb also, which is One of the strangest feelings when using the bathroom :(. I went in for 5 days of IV steroid infusions, but I have as of yet to be back to my normal. The numbness is from my knee caps down now so there has been some improvement but I was hoping for more.  I'm sure the stresses of worry for my mom's lastest health scare and then the family drama that went with it was a driving factor in this relapse.  I go back for a MRI in November and I'll be interested to see if there are any new lesions showing up or just old ones still causing havoc.   I guess time will tell.  Makes me wonder if the Copaxone injections are doing their part fighting against MS. Sigh!
It's so disappointing that I can NOT control this....I have always been able to handle stress (so I thought), but now I handle stress and my body says FUCK YOU.  We don't play well :( and I'm utterly disappointed.  Someone tell me how to handle this?  I can put a smile on my face, say everything is ok, and go on without "Letting" stress bother me...but obviously internally the stress is just destroying me.  PISSED OFF is what I am, this is NOT what I'm used to....I want to be wired differently.  It amazes me how something so ...... mental (mind over matter) really can take hold and break ones body done behind the scenes.  The fact that I can no longer "hide" is personally killing me.  I'm always the strong one, I've always been ok, I can overcome and have overcome many obstacles that my life has thrown at me.  So screw off MS and LEAVE ME ALONE!!

On the 18th I turned  40. I was first very reluctant to be "climbing that mountain, as Dan puts it", but seeing I've seen enough MS crap in my 30's I'm ready for a newer fresher beginning. Here's to a healthier 40's then my 30's. Bring it on!!  Seeing I'm still IN a relapse I found myself feeling off and having a higher BP on my birthday. So I relaxed most of the day and took it easy.  Dan had 40 gorgeous roses waiting on the table in the kitchen when I woke up and informed me we had dinner plans that evening.  With Dan's 39 birthday just 2 days after mine and our schedule was looking full our bday dinners would be on my bday, cool. Av was very excited to come home from school that day to find her new phone came in the mail so before dinner I took her to get everything activated and switched over.  She was in the land of giddy with her new phone in tow, plus she had the instructions as to where dinner was going to be.  Dinner was at surprise location, The Melting Pot. I hadn't been there in years. Dan met us there seeing we were in town for Av's phone already.  Dinner Surprise number 2 came once I walked around the corner and found my mom, Aunt Bonnie, Gail, and even Danny (n Aleana) there.  What a sassy boy as I just said good bye to him and he made no clue he was going out for dinner too.  Before dinner started surprise number 3 was presented.........a 2.5 day - 3 nite trip to Vegas!!!  I saw this HUGE sigh of relief come from Dan once the cat was out of the bag.  I guess it was weighing in him as he's been trying to plan this since Spring. We've always talked about wanting to go and now it's becoming a reality. The nursing schedule was already taken care of, my schedule was cleared, and the trip Is booked so all I needed to do is pack. Easier said then done with Ms planner here!  I've spent the last 5 days with my head spinning.  What to bring, where's Av going, and what to do while in Vegas.  Anxiety is high as I've never been away from Danny this long and again my legs n feet are still numb (Dan says he'll rent a scooter for me if we have too, lol). I decided to play it by ear and not book any shows or anything before we get there and just see what Vegas has to offer.  Once there I'm sure we'll find things to do.  I've never had anything like this done for me before so I was alil stunned and emotional even. It's not very often that I find myself speechless.  I'm always the one giving and trying to one up people, shocked I tell ya. Watch out Vegas here we come!!
 Danny bday present he made me
Receiving my "gift" ~ ironically the old house we just bought had an old poster of the Vegas strip.  So Dan rolled up the itinerary in there :)  

Melting Pot is a Fondue style restaurant

 Chocolate Fondue ~ YUMMY!!
 and the wonderful dipping choices

My ideas for Dan's 39th bday were now small and insignificant. Which just gives Dan more pleasure knowing he "Got Me".  I made reservations at his favorite restaurant, got him some comfy hunting   attire along with the box set of one of his favorite shows.  Dan spend the morning at a scheduled house burn so he was in all his glory doing what he loves to do, fighting fire. I brought some cake to the fire station for when the guys n gal got back they could have alil something special.   When we got home from dinner we put an oldie favorite movie of Dans in and relaxed. It was nice to just hang out.
I thought it was neat the trucks are #39

 It was a great reality check for Av and myself included.  This 1.5 story house was down to just the chimney 20 minutes after it was lite on fire.  Scary!!
 Danny's bday gift he made his dad.......isn't a wonderful artist!?!

My first baby, Bailey turned 14 on the 21st. That makes her 98 in dog years. I'm constantly reminded of goldens life expectancy (12) when we go to the vets. But for 14 she is looking good, old but good. Despite having Lymes and a seizure 2 yrs ago she's healthy. She's giving us a few scares here n there, but she bounces back like a champ.  Love you Miss B!!

We had our family photos done on Monday.  This year we chose to try something different and go on location to have them done.  Danny was in rare form, but I think the photographer managed to get some good shots of him.  We did them on a Railroad track with the beautiful fall colors.  I have to say I don't think we'll be taking Danny over a RR track bridge ever again....the fear factor of if a train was going to come was definitely in the back of my mind.  It was no easy feat to get him ON the tracks ACROSS a bridge so if a train happened upon us, we would have been SCREWED!!  We did a bunch of different poses then we have in the past and I can't wait to see how they turned out.  
Stay tuned!!

Thursday, September 4, 2014

Fall Back to School ~ Updated

Cooler temps are around the corner and beautiful colors will be painting the horizon.  My favorite time of year as everything is so crisp and colorful.  Wonderful smells of Baking and more home cooked meals.  Bring it ON!!

We are now onto Phase 2 with Av's orthodontist work.  She now has tops (again) and bottom braces.  These should be on for about 18 months.  She was very excited when I made the appt after her 7th grade school photos :) but I'm not too sure they will be off for her 8th grade picture.  She's been doing pretty good with them on, only 3 days worth of discomfort.  Which meant alot of pudding, yogurt, jello, soup and ice cream. 

School has started and the house is alil more quieter during the day.  Av is now in 7th grade and attending Shattuck Middle School.  WOW ~ does time fly!  She's growing up way too fast!  She has already informed me that in 2 more years she will be going to High School ~ UGH, lets just get through Middle School first.  She is adjusting well to the large school and hourly class change.  I guess the more chaos the better for this girl!!  She has some wonderful teachers this year so here's to another great school year.

Danny would have been attending 5th grade this year, but we feel it's safer/healthier for Danny to not go to school.  We had him in the home bound program through the school district for years, but unfortunately they are just not equipped for a kiddo with Danny's needs and disabilities.  We have more equipment, art projects, and fun with the nurses then what the therapist and teacher could do for him.  I felt it was a waste of time for not only us, but for the school as they could devote more time to the kiddos that they could help.
Despite not being in School, Danny doesn't get a free pass from getting an annual school photo.  So on a day he was in a good mood we took some pics and chose this one to be his 2014-15 school year photo.  Handsome young man....isn't he?!?

We got the photo montage back from when Av was at Nationals this summer.  How AMAZING is this?!?  What a great diver and how wonderful FeriaGrafix was able to catch some terrific poses.  Have I told you how Proud I am of her?!  Look at these ..........Just WOW!

Last nite I put into the calendar ~ school schedule, band concerts, confirmation schedule, Church Chimes dates, Hunting, diving practice and meets, Brigade, and appts.   We are pretty much booked solid till Spring and by then I'm sure I'll have that filled up too.  WOW!!  No rest for the weary around here.

Monday the 8th marks our 13th wedding anniversary.  I can't believe 13 years has gone by.  Some good, some bad, and some ugly.....but through it all we are together and stronger.

Later this month I will be turning the BIG 40, ugh.  Can't say that 30 was as bad as everyone lead it to be, but 40...I'm not looking forward to that number.  It's the fact of life though and it's just a number so here's to 40 more years that you guys have to put up with me :)  
I got myself a bday present and scheduled to have our family photos done again.  I can't wait!  The outfits are picked out and now we have to wait for the trees to change color.  I've never had fall photos done, so I'm looking forward to seeing how they turn out.  Smile pretty for the camera!!

I posted about my mom having surgery.  Thanks for all your thoughts and prayers.  She's had a tough road the last few weeks, but now that the surgery is behind her she can continue to heal.  There were some bumps along the road, but she's been a trooper and it looks as if she'll be in the comforts of her own home VERY soon!  We still do not know the biopsy results to the mass that was removed as it seems my mom is somewhat a medical mystery (Guess my mom and Danny are more alike then we'd thought).  The lab in San Antonio has it now, which I was told was the best of the best of labs, so hopefully we'll have more answers soon.  Continued thoughts and prayers would be greatly appreciated!!
UPDATED~  9/5 My mom is home and doing awesome!  Yesterday she got some amazing news.  The mass was not cancer!!  Thank you for all your prayers!!  It's a great day!!

I am happy to say that we have hired another Private Duty nurse to work with Danny.  I believe she is going to be a wonderful fit for our family.  Time will tell but I'm staying optimistic about it.  I love her attitude and she is really good with Danny now to see how she handles things the more independent she gets.  
I'm saddened and disappointed to report that in the first time in the whole 5+ years we've had nursing that someone feels the need to steal from my son.  What a slap in the face and punch in the gut.  Here you trust someone and they go and do this.  Makes you wonder what else is going?  I have put more checks n balances in place and a few hidden extras to catch them in action....when I do, you can believe me, IT'S NOT GOING TO END WELL.  
I'm also having a hard time with getting to correct answers as to if and why the agency nurses sent to work here with Danny need to be certified in trache/vent certification.  I had to be trained to take him home, the PDN's need to be trained, Danny's can't be admitted to a general floor at CHOW or even admitted to CHOW here in FV as they don't have the proper training support to care for a trache/vent kiddo.....but the agency feels they don't need to train their nurses to come to work here.  UM, not with my Child.  His life is much too precious for them to send me someone that doesn't know what they are doing.  These nurses are NOT glorified babysitters they are here to keep my son who is on LIFE SUPPORT alive.  I've talked with representatives with the state and with the trache vent certification program and they state that YES the agency needs to be certified through the state or have the equivalent training documented before they can work with Danny.  Unfortunately, I am getting the run around and it's unnerving.  The safety of children's lives are at stake and I will not take lightly with them.  Even more so, with the recent passing of a sweet lil boy in Michigan the end of July.  The agency sent a BSN (a nurse with a bachelors degree) into this sweet lil boys home to care for him.  He was pretty "typical" but needed a trache and vent but it sounds like he would have possibly grown out of it and not needed it when he got older.  Well his trache fell out and the nurse didn't have the proper training/skills which resulted in his passing.  I can NOT shake this!  This is unacceptable!! I will speak up and fight for training to care for these precious lil babes.  As I speak up I hear more n more horror stories from other family members about the lack of training in RN's that are send into homes.  The agencies need to be held accountable and need to train their nurses properly.  
I will be the voice for the ones that don't have one.