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.  

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