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.  

Thursday, August 21, 2014

Summer Nationals, Annie, and whole bunch more

Woah ~ Where did the month go?!  We've been pretty busy around here, but I guess what else is new.  LOL
We've been up to A Lot of stuff so sit down and take a load off.....this could be lengthy.
Talk about writer blocks or major distractions as I've been trying to update the blog for a couple weeks now, but each time I start....I get pulled off to do something.  So here goes nothing.
I'm so proud of Av and her diving accomplishments.  How amazing that she made it to Nationals!!  We headed off to Knoxville TN, as a family, to watch and cheer on Av while doing what she LOVES to do.  We took the RV down with us and stayed at a Campground that was about 10 minutes away from the University of TN where the events where held.   Once again I was in awe watching her.  I can't believe at age 11 what she can do and where she dreams to go.  I put together a montage of photos and videos of our Nationals fun.

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She was disappointed that she didn't place in the finals in any of her events.  But I told her she'll get them next year.  Again how cool and amazing that she even placed in Nationals at her age.  I can remember what I was doing at 11 and I can tell you it wasn't competing in Nationals or anything.  Way to GO Baby Girl....Keep Dreaming BIG!!  We are so PROUD of you
We had a professional photographer take photos of Av while she dove at Nationals.  They are putting together a montage for us of our favorite photos.  I can't wait to see it.  I've seen the photos and they are FANTASTIC now to see them all put together :)

On the way home we were able to meet up with Danny's Runner, Annie.  Danny and Annie were matched together through a group/program called I Run 4.  It's put together for people/kids that can not run to be matched with a runner who honors them with the miles they run/walk/exercise.  Danny was lucky enough to be matched with Annie!!  She lives in Indiana so on our way home from Tennessee our schedules worked out to meet.  How cool is that!! We will have to make a point of seeing her more often.  What a great family she has and her amazing dedication to my son, she's a wonderful woman.  Unfortunately Danny wasn't in the best of moods and there was alot of grimacing and crying, but I did get some nice photos of them together.  Of course I plan something special for him and ..... well we just go with the flow around here.
Here are some of of the photos of our visit.
Ms Annie and Danny ~ YAY!  Not all runners are able to meet up with their buddies.  We are so blessed
 Eating at Cheesecake Factory with Annie's family
 Danny with Annie's family.....minus her oldest son who, just days before our meeting, enlisted into the airforce.
 Until next time Ms Annie....Love you!!!
 I had this medal Plaque made to show off the hard work and dedication that Ms Annie has with staying on her running course and with Danny.  She sends Danny her medals and gets him t-shirts from her races when they are available.  How Cool is that!!

Ms Annie sends messages and photos to Danny and vise versa.  They chat and encourage each other all the time.

Last Sunday was Superhero Sunday and the runners were asked to participate and wear an outfit with their buddies favorite superhero.  So Danny and I decided to honor the real life superheros and go as someone in the armed forces...and what best then to honor HER son and go air force.  Danny played along too "Ms Annie....You can be My Wingman Anytime"

Annie takes Danny along with her on all her runs.....can you see the Pin we sent her with Danny's photo on it :)

I have to say that I am devastated that one of my Favorite Actors, whom enlightens everyone he comes across whether in person or on the television could not find his saving grace.  I hope Heaven is all that you dreamed it to be Robin Williams.  You will be missed dearly.  I'm forever grateful that you can put a smile on my and many faces.  
There are so many theories as to what may have happened to push you to the road of suicide.....whatever the reason was I hope you find the peace you were looking for.   The newest information that he had early stages of Parkinson's, just breaks my heart.  This is near and dear to me as my grandmother and her sister both have this nasty disease.  Rest in Peace!! 
"I used to think the worst thing in life is to end up all alone.  It's Not! The worst thing in life is to end up with people that make you feel alone."  Robin Williams

Avrianna went to her last camp of the summer, which was the Dive camp in Indiana at "Ripfest".  Once again she had a blast, Despite the cooler temps and diving off outdoor boards.  This camp was set up completely different from the dive camp last year.  It's nice that she is able to get diversity so she can pick and choose down the road of what she likes and dislikes.  Of course she learned a lot of new things...mostly on the platforms.  She is now DIVING off of 10M...OMG!!  Here are some of my favorite dives at the meet they put on for the parents on the last day.




While Av was at Dive Camp we were able to get Danny on the boat down the river.  His day didn't start off the best with lots of discomfort, but once on the water he calmed down and was able to enjoy himself.  Here are some photos of his voyage.
We had Ms Aleana and my Mom along with too :)

 This was also Gunner's first time on a boat and he did great!

 Mr Navigator!!
 No pretzels for you MR!!!

It was a wonderful day out ~ We'll be doing this more often :)

Avrianna has a bunch of Dr Appts to get ready for the next school year as a ............
7th Grader at Shattuck Middle School.
I don't even want to talk about it, LOL
Her eyes have changed once again so new prescription contacts for both eyes, dentist was a snitch for her with no cavities and she will be getting phase 2 at the orthodontist on the 26th which is upper and bottom braces.  Not something she is looking forward to, but she wants to get this done and behind her ASAP.  Phase 2 is about 16 -18 months long so she'll have them on into the beginning of next school year.   This week she got all registered for 7th grade with photos and her class schedule.  Boy was that a blast from the past....walking the halls of my old school.  After stopping by a few of her classes it all came back to me.  Man, I thought that school was alot bigger when I went there, teehee.

Danny also had a dentist appt down in CHOW earlier this week.  He once again got gold stars for having clean teeth.  Very little tarter on his teeth, which is quite common with g-tube fed kids.  He has to go back when we are down there for trache/vent clinic the beginning of Oct. to have his last 2 baby teeth pulled.  I was pretty bummed that they didn't pull them right then when we were there, as they have done that in the past at cleanings...but with being at CHOW and a teaching hospital we once again had another new dentist and she wasn't comfortable in the time frame she had set to get everything done.  UGH!!  At least they found a time that works when we are going to be down there anyway.
It's been pretty touch in go around here with the agency nurses.  I had found out they most of the nurses sent to us were NOT trache/vent certified or even worked with them before.  Needless to say I didn't sit tight on that one.  Of course the agency has told myself and the nurses questioning this that certification is not needed if from an agency.  I DO NOT feel comfortable with that AT ALL.  I had to be trained to bring him home and my PDN's have to be trained. If they are taking care of him they better have an idea of what the heck is going on.  They are NOT glorified babysitters....they are keeping my son alive who is on LIFE SUPPORT!  I've called down to the trache/vent certification program along with WI Medicaid and they both state that YES ~ ALL nurses that work with Danny directly NEED to be certified.  So regardless what the agency thinks, if they want to stay here they WILL be getting trained.  I've been pretty lenient this week as the agency is checking with corporate to see what all needs to be done.  But my "niceness" is going to wear off if things don't start progressing, this is protocol so I'm not sure why they don't know the rules, and with a few phone calls I was able to get answers about with what the state requires.
There was a lil boy names Hunter, in Michigan, that was trache/vent and he ended up passing last month because his agency nurse, a BSN, didn't know what to do when his trache came out.  This has just rocked me to my core....I will fight for the safety of our kids!!
If I can't admit my son to the Childrens hospital in Neenah or if he can't be admitted to the general floor at Childrens hospital in Milwaukee due to not proper training or education support you better believe the nurse that is going to be here caring for my son WILL BE TRAINED!
We have found the source of Danny's discomfort, that he has had off n on for a while now.  Today we brought a specimen in and he tested positive for C Diff :(  We'll start treatment and I hope he'll be back to being comfy in no time.

Yesterday I went to Wicked Ink and Jake, once again worked his magic.  My family tattoo that I had done a few years back just wasn't what I had wanted it to look like.  So here's what it looks like now.

I also added 3 more stars to my memory tattoo.  There are now 11 :(  One star for each kiddo that had impacted and touched my life in a very special way.  

Please say a few extra prayers for my mom.  Tomorrow morning she will be going into surgery to remove an orange size tumor that was found in her abdomen.  Until it's out we won't know the specifics, but we do know that it is a vascular tumor which is attached to her Ovary, Spine, bladder, and bowel.  We were told it would take 3+ hours for surgery Once in there the 3 surgeons will obviously be able to see what they are all up against.

Monday, July 21, 2014

Pool Party and Fun

Danny had his 3rd annual Special Needs swim yesterday with some of his friends.  It's always a great time! What a great group of people.....wish I could hang out with them more.  What a wonderful time telling stories and jokes with people who understand and get our sick sense of humor and crazy lifestyle.
Danny is patiently waiting for his friends to get here :)
 Danny and his BFF Griffin......what happened to our baby boys?!?  They are getting SO BIG
 Ms Sarah and her boys Raymond and Nicholas
 Ms Whitney and her daughter (Danny's girlfriend) Wyllow
 Now this is the life....what a cool looking "man of leisure"
 Pool Fun ~  smiles all around :)

 Danny's making sure Wyllow is having a good time.
 Ms Brenda with Ryan
 Our 2014 Crew...Ryan, Nicholas, Sarah, Raymond, Gabriel, Damian, Meghan, Jeromy & his caregiver (Kara), Wyllow, Whitney, Indonyah, Danny, and Griffin (not photoed here Brenda, Mike and Connie)
 Jeromy, your smile says it all!!

Someone managed to snap a photo of me in the pool too :)

This morning I was admitted at 6am for day surgery.  I had my gall bladder removed.
Looking good in the green "dress", all ready to go
 Surgery started at 7am and by 10am, I was on my way home :) The surgeon said the gall bladder didn't look too happy when he took it out.  Not only did I have stones, but the wall of the GB was thickened due to chronic inflammation.  It was inflamed when they took it out.  Now that is done and behind me I'm hoping recovery is a snap.
 They did a Laparoscopic surgery so just 3 incisions.   The one to the fall side is the one that's alil more painful as that's the one the use to pull the GB out, but for the most part I'm doing well.
I have to remind myself that I has surgery this morning as I'm feeling pretty good.  I'm up and walking around, did some laundry and putzed around in Av's room already and I've only been home for about 3.5 hours.  Taking it easy is so hard for me to do.  The worse right now for me is the scratchy throat from being intubated, but I'm sure things will get more painful once anesthesia and pain meds wear off.
This is the first procedure I've had done since being dx with MS so we'll see what, if anything happens with that.  So far MS has laid low.  I can only hope it continues this course.
As you can see I still have significant reactions at the injection site.  This is 3 days old, eep!!
Unfortunately I am having issues with getting my injection meds ~ mail order pharmacy vs insurance crap.  I believe it should be handled soon, but in the mean time there will be a lapse in meds till I can get my hands on some more again.

Avrianna went to her 2nd camp of the summer ~ Camp Onaway.  The photos that have been posted on the FB page already, looks like she is having fun.  I can't wait to hear all about it.  Miss her tons, but with surgery I'm glad she's not around seeing I shouldn't be driving here there and everywhere. 
Waiting to get on the bus to head to the Island :)

530am Friday Dan was called out to assist another town in a  building Fire.  The fire was in a building that handles recycled paper, so as you can imagine it was a long day fighting fire.  Dan was there for 10 hours and I know other departments were there longer.  Av and I checked out the neenah laundry as Dan was obviously busy and when we were done we treated ourselves to some Starbucks.  We too were 1st responders.......for a baby bird.  It fell out of its nest :(  Av put in a cup and we ran it down to the wildlife rehab down the street from our house.

 Unfortunately we found out they do not do birds there, um........whatever.  It looked to be ok, so we went back to Starbucks and put it back in the nest so Momma bird could take care of its baby once again.  Geez all the for a bird!!

After our bird rescue it was off and running to take Danny to the eye dr.  He got his eyes dilated as the Dr are looking to see any edema which could mean cranial pressures are too high.  We are still trying to figure out why his temp and heart rate tanked so low a few weeks ago.  Well no edema was found, but Danny does have a mild case of Cataract in his right eye already.  Of course Mom of the year award.....go to get eyes dilated and NO sunglasses or hat with us.  Sorry buddy!!
Just call him "Ray"
 The next step I believe is a CT scan to see if they see any excessive pressures with that in his brain.  "IF" there are signs then they will put a shunt in to help relieve some of the pressure.  Ugh ~ another piece of hardware....but I'm not too concerned that it will be needed.  I'll keep you posted!

Dan and our good friend Ricky took the boat out on the river for the afternoon/evening on Saturday.  It was a wonderful time.  The weather was great and company even better.  I was alil bummed the kids weren't with us seeing the day was so perfect, but I was also content not having to entertain them or have responsibilities for the time out.  I just sat back and relaxed.  It was very nice!!
Dan attempts to go to the ER by opening my bottle with a jack knife.  I was thristy :)  There were No injuries either

 Watch out Dan is signing!!
 These drangonflies were with us for a long period of time.  I just LOVE drangonflies.
 and the sunset was gorgeous!!

 I hope you all are having a wonderful, healthy, and safe summer!  I'll take a few days to recover and then it's go time to get ready to head down to TN to Av's diving Nationals.  Can't wait!!